TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Epilepsy’

“Another Fork in the Road” . . . Brain Injury Radio Network . . . Interview: Lisa Dryer

YOU ARE INVITED!

Lisa Dryer Survivor of Brain Injury, MS – Multiple Sclerosis, Lupus, Epilepsy, and Sjögren’s syndrome

Meet Lisa Dryer

putthis_on_calendar_clip_artIt took Lisa Dryer nearly three decades to put a label on what she knew was wrong all her life. As a child, Lisa, endured learning difficulties and experienced many seizures. She didn’t realize then that they were probably caused by the cardiac arrest and the lack of oxygen to her brain as a premature infant in the Neonatal Care Unit.

When recently Lisa had a computerized tomography (CT) scan that showed an abnormal brain, she laughed and said, “I know that already! Tell me something I don’t know!”

Lisa approaches her life with these thoughts. “Find the beautiful around you and stay calm.”

Come One! Come ALL! 

What:        Interview with Lisa Dryer, BI Survivor

Why:        Lisa will share her story of living with Brain Injury, MS – Multiple Sclerosis, Lupus, Epilepsy, and Sjögren’s syndrome and how she keeps a happy face.

Where:     Brain Injury Radio Network11 Lisa Dryer Survivor 1 060115 281536_2048711670666_4659924_n

When:       Sunday, June  7th, 2015

Time:         5:30p PT (6:30p MT, 7:30p CT, and 8:30p ET) 90 minute show

How:         Click: Brain Injury Radio Network

Call In:    424-243-9540

Call In:     855-473-3711 toll free in USA

Call In:    202-559-7907 free outside USA

or SKYPE

If you miss the show, but would like to still hear the interview, you can access the archive on On Demand listening. The archived show will be available after the show both on the Brain Injury Radio Network site and on my blog in “On the Air.”

(Clip Art compliments of Bing.)

(Photo compliments of Lisa Dryer.)

Caregivers SPEAK OUT! . . . . . Christina WIlliams

Caregivers SPEAK OUT! – Christina Williams

by

Donna O’Donnell Figurski

Christina WIlliams1. What is your name? (last name optional)

Christina Williams

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

Pine, Colorado, USA

3. What is the TBI survivor’s relationship to you? How old was the survivor when he/she had the TBI? What caused your survivor’s TBI?

The TBI survivor was my fiancé. His TBI was caused by a motor vehicle accident. He was 37. I want to add that it was in 2008, so it happened more than six years ago.

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

I was at the scene of the accident. I was his main caregiver; I still am now. I began care as soon as I could. I was 47 when the accident happened.

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 TBI? If so, were you able to continue working?

I worked with my fiancé in our own business – building custom homes, decks, basements, bars, etc. We also designed and created log furnishings on the side. When he got hurt, I was unable to continue working. I lost my job because I assisted him. We lost both businesses.

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

No

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

Never.

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

Yes, my fiancé was in a coma. I sat at his bedside, cried, and prayed a lot. I NEVER left the hospital for 72 days. I finally did after he was transferred to the rehab hospital.

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 this was happening?

My fiancé was accepted to Craig Hospital in Denver, Colorado, (one of the top ten rehabilitation facilities in the US for spinal cord and brain injuries) for intensive physical, occupational, and speech therapies. He also had group therapy, recreational therapy, and swim therapy. I was with him every day. I had to be there before breakfast to help dress and feed him and to get him to his daily “classes.” He remained an inpatient for three and a half months. He then became an outpatient. I took him to therapy three times a week at first. Over time, it decreased to one or two times a week. After about sixteen months, we no longer went. We still continue to go back to Craig Hospital for specialized therapies for issues he has had since the accident. The last one was vestibular therapy for vertigo symptoms. But, they couldn’t treat it, so they worked on his balance issues.

11. What problems or disabilities of your TBI survivor required your care, if any?

He has epilepsy due to his TBI, so he requires supervision 24/7. He can never be left alone. Because of seizures and balance issues, he has frequent falls and injuries that require medical attention and trips to the Emergency Room. He can’t drive or work. He requires prompting for many of daily living skills, including hygiene, which is a huge issue.

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

Both our lives have changed drastically. Our lives are worse, since we can’t have the “normal” life together that we expected. We now realize that we took our lives for granted. Buying a home or a new car and taking vacations are no longer possibilities in our lives.

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

I miss the freedom and having hope for the future.

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

I enjoy spending time with him every day. Every day is NOT “sunshine and roses,” but we make the best that we can out of every day. He is simply amazing. I look at him and watch him in awe, as he does whatever he does. I have a saying: “Let’s just hope today is better than yesterday.” It helps us focus on the positives in every day.

15. What do you like least about TBI?

I dislike that the TBI has destroyed such a good person and his future. We also lack the money and the ability to do whatever we want.

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

Yes. God.

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

We were officially engaged two days before the accident. We were SO in love and excited to be planning our future. Since his injury, his emotions (or I should say “ his lack of emotions”) and his poor judgment have caused us many, many problems.

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

We have no social life. ALL our “friends” vanished after he was hurt. Our social life is whatever we do in our day. When he has a doctor or therapy appointment, we plan a whole day in the city together.

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

I don’t have any hopes or plans anymore. We just take it a day at a time. In ten years, I imagine that we will still be doing what we’re doing now, but perhaps in a different house.

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

Turn to Facebook for support, especially the TBI pages. You may not know the people, but they have been a constant and great support not only to me, but also to so many others – survivors, caregivers, and their families and friends. It’s nice to read the stories of others and to share comments and advice. When my fiancé was hurt, I wasn’t using Facebook. It would have been so nice just to know that I wasn’t alone in my journey. Facebook is my “human” outlet for support. I have also come to find out that I can help others. That is more rewarding to me than I can say.

I think what I would want people to know that they aren’t prepared for is that it is VERY common for TBI survivors to start having seizures a year or so after the injury. It was something we weren’t prepared for, or even thought could happen. He was on anti-seizure meds while in rehab, but there was “no seizure activity.” So, they took him off the medication, and I thought it would never be a concern. Boy, was I wrong!Christina Williams 2012

Thank you, Christina, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.

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

(Photo compliments of Christina.)

Disclaimer: The views or opinions in this post are solely that of the interviewee.


SPEAK OUT! NewsBit . . . The Future of Treatment for Brain Injuries – New Brain Tissue From Special Cells

The Future of Treatment for Brain Injuries – New Brain Tissue From Special Cells

Newsboy thResearch on synthesis and regeneration of brain tissue is advancing rapidly. Here are four recent news reports on current research (1, 2, 3, 4) that predict that the near future of medicine will seem like science fiction.

Why is there so much excitement? Neuroscientists have found that the answer to regenerating brain tissue lies in the enormous potential of “stem cells.” Each of your organs, including the brain, has a reservoir of special cells (“stem cells”) that can regenerate the tissue of that organ. Since all cells of the body have exactly the same DNA (or blueprint for the cell), the cells of different tissues are formed by activating different subsets of the DNA. (Think of the cells of different tissues as running different programs.) The reports discuss ways to make neural stem cells, how stem cells reproduce, and how implanting neural stem cells into the brain is already controlling or curing diseases of the brains of animals. When neural stem cells are implanted into the brain (a relatively simple surgical procedure), they become whichever cells are needed to replace old, missing, or damaged brain cells. In this way, the brain essentially heals itself. The additional (i.e., implanted) stem cells help a natural process. Some of the experiments have been done in mice (see my previous explanation of why the mouse is a good first model for humans), but soon the experiments will be done in humans. The current research predicts that repair of brain injury is not only possible, but is also likely to be done in the near future.

In paper #1, neuroscientists from the Medical College of Georgia at Georgia Regents University identified a molecule of neural stem cells (ganglioside GD3). GD3 is crucial for the ability of neural stem cells to reproduce and maintain a pool of healthy stem cells that can be used to replace old or damaged cells in the brain. Normally organ formation means that the cells are finished reproducing. They’re at a kind of “dead end” for cells. The ability to continuously reproduce is one of the amazing properties of stem cells. They’re part of the organ, yet they can reproduce and they can become any cell, so there is always a reservoir of stem cells ready to become any needed cell. In a major advance, the research team at the Medical College of Georgia showed in mice that the pool of neural stem cells in the part of the brain they examined was greatly reduced when the cells lacked ganglioside GD3, and the pool was restored when GD3 was present. The scientists want to figure out how to keep neural stem cells making abundant GD3. That way, there will always be plenty of neural stem cells to replace brain cells as needed.

Paper #2 describes groundbreaking research by neuroscientists at the Whitehead Institute of MIT. They were able to take the cells of fully developed tissue (cells that can no longer form new tissue and don’t reproduce) and turn them into neural stem cells that can reproduce and form new brain tissue. There are two exciting aspects of this research. First, the team was able to form “pluripotent” stem cells (i.e., cells able to form new tissue of any kind) directly from “mature” cells (i.e., cells of any fully developed organ) without requiring them to go through an undeveloped state normally seen only in the cells of early embryos before their development into our various tissues. Second, the necessary factors were introduced and turned on by a chemical. Once neural stem cells were formed, the chemical was removed, and the cells retained the properties of neural stem cells. This was the first time such a feat had been accomplished. It guarantees an abundance of neural stem cells that will be needed for transplantation therapy.

Paper #3 describes the research done at Lund University in Sweden. Parkinson’s Disease is a disease of the brain that causes movement problems. Millions of people worldwide have this affliction. It’s known that the Parkinson’s brain is deficient in the production of a chemical (dopamine) that is needed for proper movement. Neuroscientists derived dopamine-producing neurons from human stem cells. The dopamine-producing neurons were implanted into the brains of rats with a Parkinson’s-like disease. The synthetic neurons were specifically implanted into the region of the rat brain that controls movement. The implanted dopamine-producing neurons colonized the brain and led to normal levels of dopamine in the brain. As a result, the diseased rats had normal motor function.

Sixty-five million people worldwide are afflicted with epileptic seizures. About 1/3 are not helped by any medication. One highly regarded hypothesis is that the cause of seizures is due to a low number of seizure-inhibiting neurons (interneurons). Paper #4 tells of the research of neuroscientists at McLean Hospital in Massachusetts and the Harvard Stem Cell Institute. They implanted seizure-inhibiting neurons into the brains of mice bred to have epileptic-like seizures. The seizure-inhibiting neurons were human cells derived from human stem cells. Fifty percent of the mice with the implanted cells no longer had seizures. The other 50% had a severely reduced number of seizures. The scientists showed that the human neurons integrated into the mouse brains and dampened the signals from the highly excited mouse neurons that lead to epileptic seizures. The next step is to find a way to purify the interneurons, so only seizure-inhibiting neurons would be implanted.

(Clip Art compliments of Bing.)

SPEAK OUT! NewsBit . . . Electromagnetic Pulses Correct Abnormal Neural Connections

Electromagnetic Pulses Correct Abnormal Neural Connections

newsboy-thResearch by scientists at The University of Western Australia and the Université Pierre et Marie Curie in France has shown that weak sequential electromagnetic pulses (rTMS) can help to properly locate abnormal neural connections in mice. rTMS does not affect normal neural connections, meaning there should be no side effects. The immediate concern is to have a new therapy for such neurological problems as epilepsy, depression, and tinnitus. Such a therapy should also provide a benefit to TBI survivors, who are constantly “rewiring” parts of the brain. (Full story)

 

(Clip Art compliments of Bing.)

SPEAK OUT! NewsBit . . . . . . . . . Brain Implants To Restore Lost Memories?

Brain Implants To Restore Lost Memories?

newsboy-th270,000 veterans of the wars in Iraq and Afghanistan have been diagnosed with a traumatic brain injury. TBI could become the signature injury of these wars. The Military is therefore very concerned with finding treatments for vets and troops with brain injuries. A major concern is memory loss. As part of President Obama’s multimillion-dollar BRAIN (Brain Research through Advancing Innovative Technology) initiative, DARPA (the Defense Advanced Research Projects Agency) has awarded $15 million to the University of California at Los Angeles (UCLA) and $22.5 million to the University of Pennsylvania (Penn) for four years of research on brain implants that will provide electrostimulation to neurons involved in specific memories. This seems like science fiction, but the neuroscientists heading the two teams are optimistic, although they say the work will be very hard. From their research on epileptic patients, they think stimulation will help neurons retrieve memories. (Full story)

 

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No memory of the day that changed my life

My name is Michelle Munt and this is my story about surviving a brain injury and what I continue to learn about it. This is for other survivors and their loved ones, but also to raise awareness of what can happen to those in an accident. This invisible injury too often goes undiagnosed and it can be difficult to find information about it. I will talk about things that have helped me as I continue to recover and invite others to see if it works for them too.

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