TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘BI’

SPEAK OUT! Itty-Bitty Giant Steps

SPEAK OUT! Itty-Bitty Giant Steps

presented by

Donna O’Donnell Figurski

Itty-Bitty GIant Steps for Blog

SPEAK 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 donnaodonnellfigurski@gmail.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.

Kathleen Lynx
Survivor of Brain Injury

Kathleen Lynx (survivor) … I just had to crow. It’s been nine years post TBI (traumatic brain injury), and I was able to sew a pair of PJ pants. They were originally going to be capris, but after a few errors, I have sleep pants. I goofed on measuring and had to put in eight inches of side panels so they would fit, but I finished them. It’s the first item I have sewn that fits. Yeah!

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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Survivors SPEAK OUT! . . . . . William

SPEAK OUT! – William

by

Donna O’Donnell Figurski

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

William

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

Eastern Tennessee, USA

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

Age 43

4. How did your ABI occur?

I was subjected to 334 ppm (parts per million) of carbon monoxide for six days.

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

At 6:00 am on the seventh day, I was found unconscious outside my apartment door.

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

A hyperbaric chamber was used on three occasions while I was in a coma.

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

I was in a coma 32 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 had physical and speech therapies for two years – first, inpatient; then outpatient.

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

Pre-injury, I was a retired Marine Colonel on discharge leave. After my injury, I developed a pronounced hyperkinetic motion disorder, with severe spasticity, a short-term memory disorder, and slow-awakening problems. I cannot walk, type, write, or do anything requiring either fine-motor control or large muscle use.

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

I went from an active Marine to an inactive thinker. From one perspective, my life got significantly worse – about the worst it could. In another perspective, it became rather better. I have a better logical process; I am more understanding of others; and I have the dubious privilege to be unable to use any pharmaceutical drug. To combat this odd aspect of my disability, I studied to be an herbalist, and I live quite well. I cannot have many food chemicals, so I eat better too.

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

I miss being a Marine Corps Colonel.

What do you enjoy most in your post-ABI life?

12. I enjoy knowing how to help people who cannot yet cope with their disability. I help anyone who asks.

13. What do you like least about your ABI?

My brain injury turned me into a burden on everyone in my circle. I can do very little. Whenever I try to use my muscles, hyperkinesia starts up, followed by severe spasticity. It makes doing most things impossible.

14. Has anything helped you to accept your ABI?

I eventually realized that this was what I had left in my life. I could either mope about lost opportunity, or I could grasp any opportunity that came my way. I chose the latter – I cannot change anything, so I willingly accept it.

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

My life has been affected in every conceivable way. Everything is different. Relationships are far harder – people do not wish to know the twitching cripple in the fancy wheelchair. Physical relationships are completely different – I cannot be an active partner, so I must be passive. It takes a special person to be able to cope with that.

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

Able-bodied people do not like to see severely disabled people. It embarrasses them. This makes socializing rather difficult. People will say “Call me” and give me the wrong number. Or, they will shudder at the thought of seeing me again. In stores, I am apparently invisible.

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

Caregivers come and go. Some are good; some are perverts; some are thieves. They are necessary, so I lose things, get humiliated, or get assaulted. I have a friend who takes time to look after me once or twice a month. My friend works away and is home infrequently.

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

It would be nice to still be breathing. I have lived as I do now for twenty years. I hope to live for longer.

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 ABI survivors with your specific kind of ABI.

Accept it as it develops. It takes time to reach the level you will live at. Accept that, and it will be easier.

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

It is easy to be angry at the condition you find yourself in. You were not supposed to get disabled in any way, and you probably think that it is horrifically unfair. That is completely true in every case, but it does not help you go on with living. To do that, you have to look at what you have been given, what you still have, and what you can do. Take that inventory slowly and carefully because it is important. When you know what you have to work with and what you can do, don’t try getting anything else. Just accept what you have and adapt to live at that level. When you have done that and you can live calmly at that level, you could try to do more, but not until you are calm with your disability. So many people spend all of their time trying to fight the un-fightable. They are constantly miserable because it does not seem fair. I know it isn’t. I lost nearly everything three months after I retired from the Marines. All my dreams, hopes, and expectations died along with some of my brain. I really do not need to make worse what I have left by being miserable about it. That is foolish. I have to go on living. I had, and still have, no alternative, so I must make the very best of what I have. You will enjoy a better standard of living if you do the same.

 

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

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

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.

(Clip Art compliments of Bing.)

Brain Injury Resources . . . . . . Amazing Potential of Stem Cells to Repair the Brain

Amazing Potential of Stem Cells to Repair the Brain

Brain th-2My NewsBits are often about advances in stem cell research (1, 2, 3, 4). There is good reason – the recent advances in our understanding of stem cells make them a key component in efforts to heal the brain. This video shows the potential of stem cell-based therapy.

Siddharthan Chandran

Dr. Siddharthan Chandran on TED Talk

For years, medical students have been taught incorrectly that the brain cannot repair itself. Recent exciting research on stem cells has definitely put that “dogma” to rest. In fact, the rapid pace of discoveries about the brain indicates that the future may be closer than you think. The brain actually does repair itself, just not enough. The repair the brain does do uses a natural reservoir of stem cells (pluripotent cells that have the potential to become any cell). Recent research has shown that we will be able add more stem cells to boost the natural repair of the brain and restore lost functions, even functions usually considered to be lost forever. In the video, Dr. Siddharthan Chandran hypothesizes that the added stem cells help repair the brain, not by acting themselves to do the repairs, but by activating more of the brain’s own stem cells.

 

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(Clip Art compliments of Bing.)

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