TBI – Survivors, Caregivers, Family, and Friends

Archive for the ‘Brain Injury Resources’ Category

Brain Injury Resources . . . Safe Sports

Safe Sports

 

Bubble-Soccer

 

This short video (1 min 38 sec) shows a solution to the danger of contact sports, and it looks like fun! (Video)

 

(Clip Art compliments of Bing.)

 

 

Brain Injury Resources . . . . . . . Compensating for a Disability – Guitarist Billy McLaughlin

Compensating for a Disability – Guitarist Billy McLaughlin

 

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Right hand dominant, Billy McLaughlin, plays the guitar left-handed.

TBI survivors often have a life-long disability. The temptation, and sometimes the advice, is to submit to the disability, often causing one to stop an activity that he or she loves. This video tells the story of Billy McLaughlin’s early life. His passion for the guitar led him to develop a unique sound that made him one of best up-and-coming guitarists in the world. Then he got a neuromuscular disease (focal dystonia – see this video for details) that affected his right hand and his ability to play the guitar. This video shows that he didn’t give up. He accomplished a seemingly impossible task – he learned to play the guitar equally well with his left hand. This uplifting story shows the power of the human spirit and will affect anyone who is trying to deal with a disability.

 

Brain Injury Resources . . . . . . . Comedienne – Stella Young on Disability – View From A Wheelchair

Comedienne Stella Young on Disability – View From A Wheelchair

 

tumblr_n6poil0O1s1r1tezoo3_500All TBI survivors have to live with one or more disabilities. Very often this leads to depression, in part because disabilities, whether visible or invisible, are considered by almost everyone to be limitations. Even the word “disability” has a negative connotation. Stella Young, who spends her life in a wheelchair, has an interesting perspective on disability that she speaks about in this TED Talk. She talks about “social disability,” in which disabled people are thought of as being limited. Society has imposed a major hurdle on disabled people by its own definition of them. Stella hopes for a society that doesn’t see disability as a “bad thing.” To be sure, disabilities often make daily life more difficult, but Stella wishes for a society in which disabled people can be seen as normal and can flourish. (Video)

 

Brain Injury Resources . . . . . . . . . . TBI Awareness, The Drew Carter Project Interviews Me!

Interview with TBI caregiver, Donna O’Donnell Figurski
as seen on TBI Awareness, The Drew Carter Project

 Drew, thank you for your interest and for taking your time to interview me for your blog. Drew writes about a lot of great topics. I hope my readers will stop by to see what he shares with his readers – as we raise awareness of TBI – one view at a time.

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1. How do you find time for yourself? Does this change according to your husband’s recovery? (I think I remember you telling me he had one)

My husband’s traumatic brain injury happened more than nine years ago. He wasn’t expected to survive any of his three brain surgeries (for a cerebellar hemorrhage, removal of an aneurysm, and removal of an arterio-venous malformation), but he did! When David returned home from his stays at the general hospital and the rehabilitation hospital (two and a half months after his event), picture a rag doll. He was reduced to an infantile state and was completely dependent on me. He was unable to feed himself, dress himself, and take care of any of his daily activities. Fortunately, some friends and family helped me in the beginning. After taking a family leave for three and a half months to stay by David’s side in the hospitals, I returned to teaching my first graders. However, whenever I was home, I was totally responsible for David’s welfare. For at least a year, I was never able to leave him alone. David was a prisoner without bars. So was I.As the years passed, David became more adept at caring for himself, and slowly I felt confident enough to leave him alone at home for short periods of time. The intervals grew as the years marched on, and now I can comfortably leave David for long spans of time. This has freed me immensely. I am able to run errands without having David accompany me. I am able to attend my writing-group meetings, and I have joined the theater, as an actor, assistant stage manager, and director. Despite my new freedoms, David and I remain tethered together by our cell phones. I am only a phone call away.
Unfortunately, because of David’s severe loss of balance, even nine years later he cannot leave the house unassisted.

2. Do you have a sense of community, like support groups or other services?

When David was released from the rehabilitation hospital, I took him to a local brain-injury support group. Although David’s brain was severely damaged, he was not able to relate to the other folks there. He said it made him feel worse, so we stopped going.

When David was in the hospital, I met a woman whose husband had a TBI two weeks after David. I made a point of getting to know her because I thought I could help her. Though the TBI of Judy’s husband is very different from David’s TBI, Judy and I became close friends. But, since we live a distance apart, we offered support via email, phone calls, and an occasional visit.

I was not aware of any other support groups for caregivers back then. It was only in December of 2013 that I found via Facebook brain-injury support groups online. I am now an active member of several traumatic-brain-injury groups, all of which offer friendship and support and answer questions for both caregivers and survivors.

I’m so glad to have found these groups. They provide instant information and support for anyone who needs it.

3. What have you found to be the hardest part of a TBI recovery?

Wow! That’s a hard question. The lives we knew were ripped from us on that fateful morning of January 13, 2005.

I feel very much like Dorothy, when the cyclone picked her up in Kansas and dropped her on the yellow brick road. Like Dorothy, I searched for a way home to the secure and familiar. Unlike Dorothy, I’m still searching.

When something burst inside David’s head, our lives changed forever. It was a complete role reversal. In an instant, I was suddenly in charge, and I was not prepared for my new life. Before TBI, David oversaw the business of running our home – juggling the bills, doing home repairs, making decisions, and . . . taking out the trash. I liked it that way. I chauffeured the children to their soccer games, gymnastic meets, doctor’s appointments, etc. and prepared breakfasts, lunches, and dinners. I liked it that way. In the evenings when David returned from his laboratory at Columbia University and I came home from my 1st or 3rd graders, we fit in “walk-talks” through the neighborhood. We liked it that way.

After David’s TBI, I had to figure out how to run the house. The kids were grown and gone, but I had to pay the bills. (What bills? I didn’t even know what bills we had!) I had to get money from an ATM. I know it’s crazy, but I didn’t know how. David had shown me many times, but, like Scarlet O’Hara, I never paid attention. “Tomorrow, I’ll do it tomorrow.” Well tomorrow slammed me in the face on January 13th, 2005. I was stuck when David slipped into an unconscious state and the code slept with him. I didn’t know who to call for home repairs or to distinguish between junk-mail and important mail, and . . . I had to take out the trash.

Those are some of the things that were very difficult for me. Another was dealing with insurance companies. Fighting with them to pay the bills was overwhelming and extremely stressful. The phone calls and the letters seemed unending. I felt it was unfair for my insurance company not to pay the claims that they so proudly advertised they would do when they were recruiting my business. I kept my part of the bargain. I paid my hefty insurance payments for countless years on-time each month, with no reminders or urging from the insurance company. I never missed a premium payment, though I hadn’t need of their services. Yet, when it came time for them to cover David’s hospital and doctor bills, they tried to renege, not only making me jump through hoops, but also making me feel like I was shaking a tin can on the corner. It was not only downright insensitive, it bordered on criminality. I know many folks will relate to this. I am not alone.

But, the absolute worst of course, was losing the man I married. The man I met at age sixteen went to sleep in a coma, and the man who woke up is a new version of him – a wonderful guy, just the same, whom I will love to forever, but I often miss the “old” guy too.

4. What has been the easiest part of recovery?

This question, too, takes some thought. When I brought David home after his spending two and a half months in hospitals, I thought I would lose my mind. Not only was he like a rag doll and able to do nothing for himself, he was also not quite right with his thinking. He didn’t understand what was going on, and it was very difficult for him and me to live our daily lives without the hospital support. For years, I became his extra self. I did everything for him.

But after time, as he slowly regained some of his missing skills, life became a little easier. David eventually returned to his laboratory at Columbia University. His nature before his TBI was always good, but with his job, he was usually on overload and lived with a lot of stress. After his TBI, he seems more relaxed and lets many things roll by. He tries to make things easier for me, and, now that he is more able to care for himself, he encourages me to pursue my many interests. I have become involved with the theater and my writing groups. I am able to meet girlfriends for lunch dates and walk-talks, or slip out for a quick coffee with a friend.

So, I guess David’s accepting attitude, coupled with his persistence to get better and to make a better life for both of us, is what gets us through.

5. Have you found a spiritual path helpful?

Truthfully, neither of us follows a spiritual path, but our belief and love for each other is what bolsters us through each day, week, month, and year. Together, we will do this!

 

Brain Injury Resources . . . . . . . Flooding – Definition and Coping Strategies

Flooding – Definition and Coping Strategies

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Many TBI survivors have difficulty filtering lots of stimuli. At times when several things are happening at once, some TBI survivors may feel overwhelmed and less able to do things. This video by the Northern Brain Injury Association explains what flooding is, what causes it, and how to avoid, minimize, and cope with it. (Video)

(Clip Art compliments of Bing.)

Brain Injury Resources . . . . . . . . . . Facts and Advice

TBI Resources: Facts and Advice

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“When caregivers care so much that they neglect themselves, it can create a downward spiral of self-destruction known as Compassion Fatigue,” which can result in “feeling immune to the suffering of others,” “feeling hopeless,” “insomnia,” “excessive blaming,” “bottled up emotions,” “isolation,” “addiction,” “neglecting yourself,” “financial problems,” “chronic physical ailments,” “apathy,” “preoccupation…with your loved one’s health and well-being,” or “violent thoughts.”…”Unidentified compassion fatigue causes a decline in health for caregivers and diminished care for their loved ones.”

13 signs of compassion fatigue (lift)

“Currently, almost a third of strokes occur in people under the age of 65, and this figure is set to rise.”

‘My arm went numb and I had a headache – but I never dreamed it was a STROKE’: Healthy woman, 20, is left paralysed down one side (Mail Online)

“One reason behind this jump in brainpower may lie in how much of the human metabolism is devoted to the human brain — it consumes a whopping 20 percent of the body’s total energy.”

Brain Evolution Study Shows Humans Sacrificed Brawn For High Intelligence (The Huffington Post)

“Some 20-60% of people with a TBI experience depression soon after the injury or even years later.”

Why Is Depression the Number One Symptom After a Brain Injury? (brainline.org)

“Studies show that more than 50 percent of people suffer from chronic pain disorders in the years following a brain injury.”

Why Does Everything Hurt So Much After Brain Injury? (brainline.org)th-1

“Dealing with ambiguous loss (i.e., a TBI survivor who has changed) means:

  • Recognizing and accepting your own feelings; mourn whenever you feel the need;
  • Finding a safe and supportive connection to a therapist, counselor or church;
  • Getting to know the survivor as the person he or she is now;
  • Utilizing healthy coping skills of having fun and using humor whenever possible;
  • Finding hope and exploring new treatment options;
  • Accepting what you’ve lost, but refusing to give-up on recovery!”

More than One Victim: Recovering from a Loved One’s Traumatic Brain Injury (CoSozo)

“When communicating with a person who has a brain injury, it’s important to listen, listen, listen. It’s important to be positive and encouraging in your statements, to be empathetic and at times to use humor in a positive and supportive manner.”

Making a Difference #8: Communication (brainline.org)

“No one can know for certain what our potential is.”

Lost & Found: What Brain Injury Survivors Want You to Know (brainline.org)

 

As I say after each post:

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

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If you like my blog, click the “Like” button under this post.

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If you don’t like my blog, “Share” it with your enemies. That works for me too!

 

(Clip Art compliments of Bing.)

 

 

 

 

 

 

 

Brain Injury Resources . . . . . . . . . . The Diving Bell and the Butterfly

      The Diving Bell and the ButterflyThe Diving Bell and the Butterfly

by

Jean-Dominique Bauby

 

The Diving Bell and the Butterfly was written by ELLE editor, Jean-Dominique Bauby who survived his stroke with a totally paralyzed body. His only functional part was his left eye. With this eye and a system of blinks, (ex.: 2 blinks for A, 3 for B) he wrote the account of his stroke. He died shortly after his book was published.

 

As I say after each post:

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

Please follow my blog. Click on “Follow Me Via eMail” on the right sidebar of your screen.anim0014-1_e0-1

If you like my blog, click the “Like” button under this post.

If you REALLY 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. That works for me too!

 

(Clip Art compliments of Bing.)

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The Care Factor

Loving someone with a Traumatic Brain Injury

Brain Injury Blog With Free TBI Information

Brain Injury Blog and Helpful Articles

Montclair Write Group

Writing Support Group

Brain Injury Support Group of Duluth-Extension

Brain Injury Information and SUPPORT

Women Worldwide Network

Women around the world share their incredible stories

Brain Aneurysm Global Insight

Brain Aneurysm, cerebral hemorrhaging, hemorrhage stroke

Motivational Coping & Healing

Rising Above the Hardships

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Creative Nonfiction, Memoir, and the Brain

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Memoir and creative nonfiction

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Tomorrow's Best Sellers Today

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Knit (Verb) | 'nit : to join together

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It contains the world best places and things.

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