TBI – Survivors, Caregivers, Family, and Friends

“Brain Injury Resources – Unleashed Talents”

(originally published July 29, 2014)

presented by

Donna O’Donnell Figurski

 

Can TBI Unleash a Talent That We Didn’t Know We Have?

 

Brain th-2TBI survivors are usually defined by others in negative terms. Survivors are often seen as people who are no longer able to do something they once did easily or as people who are physically disabled. It has become strikingly evident from the interviews on this blog (Survivors SPEAK OUT!) that TBI survivors, once they have accepted the new normal of their lives, often show immense courage and determination. They have aspirations and exhibit motivation that is intensified or that wasn’t even known to exist. Here are two videos that show a positive outcome from TBI.

The first video is long (1 hr, 5 min), but it is mesmerizing. In it, neurologist Dr. Darold Treffert discusses (with videos) the “savant syndrome.” It is thought that some abnormality in the brain unleashes a skill that normal people find to be phenomenal. At 29 min 20 sec into the video, Dr. Treffert discusses “The Acquired Savant” – a person who has become a savant after a brain injury. Although becoming a savant after a brain injury can happen, it’s rare. But, any model of the brain has to be able to explain the savant syndrome. Dr. Treffert suggests that the brain comes “fully loaded with software” and that the normal functional brain eventually suppresses much of its intrinsic “software” to reduce stimulation. This means that we all may have suppressed talents.

The second video is much shorter (15 min) and is relevant to all TBI survivors. Ann Zuccardy redefines what it means to be smart. A person may define himself or herself by a certain talent or ability. Does one’s life then become unfulfilling when that skill is lost as the result of a brain injury? Ann Zuccardy, who was affected by a brain injury, tells us that the loss of a dominant skill allows a person to nurture and/or develop other skills that may have been ignored. These other skills can be as useful as or even more impressive than the dominant one was.

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(Photos compliments of contributor)

 

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So, Whaddya Think?

Do Motorcycle Helmets Protect the Brain?

by

David H. Figurski, Ph.D

presented by

Donna O’Donnell Figurski

David H. Figurski, Ph.D. survivor of brain injury

Whether or not motorcycle helmets reduce head injuries is a topic that is highly controversial. Witness the fact that some states have motorcycle helmet laws while others don’t.

Clearly, helmets do not prevent all brain injuries. Former National Football League lineman George Visger (San Francisco 49ers), who’s a survivor of a football-induced brain injury, worries about the false sense of security that helmets can engender.  (Listen to minutes 12:00-14:00 of Donna’s August 16, 2015, interview of him.)

On the positive side, many people believe motorcycle helmets can reduce minor head injuries and thereby mitigate or even prevent some brain injuries. I am staunchly pro-helmet in my viewpoint, but I am also realistic about how protective a helmet actually is. Recently, I encountered someone who is an adamant proponent of the anti-helmet viewpoint. Here’s what happened.

Donna and I recently attended a lecture by Carrie Collins-Fadell, Executive Director of the Brain Injury Alliance of Arizona (BIAAZ), on the basics of brain injury and the work of the organization. At one point, I asked Carrie if BIAAZ had an official position on motorcycle helmet laws. (Arizona currently has no such law.) Given the current debate, her unsurprising answer was that it does not.

I’m a firm believer in helmets because one saved my face and possibly prevented a serious brain injury. I loved my bike, and, like most riders feel about their riding ability, I considered myself to be competent, alert, and safety-conscious. But, my bike was totaled in an accident that was not my fault.Vehicules-Moto-476361

As I rounded a bend in the Catskill Mountains of southern New York one Sunday morning, I encountered a massive oil spill that was left on the road by an emergency car repair. My tires lost their grip, my bike and I went down, and my bike ended up underneath on oncoming car. Fortunately, I was thrown from my bike and ended up down the road. (The hysterical driver thought I was still with my bike underneath her car.)

The point of this story is that I was wearing the best full-face helmet I could buy. I hit face-first. I know that because the chin-bar on my helmet was ground down from the road. Because of that helmet, I was able to walk away – although with some road-rash. I hate to think what would have happened to me if I had not been wearing that helmet.

CoolClips_vc040139I told Carrie that I was in favor of helmet laws. But, another member of the audience took issue with me and presented the opposing view. “The only reason I would wear a helmet is if a law required me to.” We had a short discussion about our opposing beliefs. There are valid arguments for both opinions, and I know much more could have been said. But, I was mindful of the time, and I suspected Carrie was eager to get back to her talk. (I know Donna was happy I ended quickly!)

Both of us made valid points. I’d like to address comments that were stated and what could have been said.

The audience-member argued that a helmet adds possibly dangerous weight to a rider’s head. This is a valid point.

Helmets can add up to 5 pounds to the head, and that extra weight can endanger the neck, with consequences for the brain and/or spine. (Professional race-drivers are well aware of this danger. I raced cars at the amateur level, and, again, I considered myself to be safety-conscious, although Donna thought that racing cars at all was a strange way to show it! Nevertheless, I was the first driver in the group to use a HANS device – a carbon-fiber collar that’s held tight by the safety harness. The point is that the weight of the head and helmet is somewhat counteracted by tethering the helmet to the device. There is evidence showing that the reduction in the number and/or force of head impacts by a HANS device is protective.)dk163

The audience-member also argued that a full-face helmet cuts down on peripheral vision.  I completely agree that good peripheral vision is really important for safe riding. I adamantly disagreed with the statement, however, that a full-face helmet interferes with peripheral vision, but I didn’t take the time to give my reasons for believing that way.

It’s true that old full-face helmets have small eye-ports and restrict peripheral vision. But, many modern full-face helmets have wide eye-ports so peripheral vision is not restricted. That was a consideration when I purchased my helmets for motorcycling and car racing.

Another point the audience-member made was that a helmet does nothing to protect the brain in a serious accident and, as was noted above, may make neck injury more likely. I agree that helmets are not protective in a major accident. I know of a rider who was killed while wearing a good helmet.

A helmet will not protect the brain in a catastrophic accident, but a helmet might reduce the severity of a brain injury in a minor accident. A slight impact of the head in a highly-cushioned helmet may lead to no brain injury at all or to a less severe brain injury. But, a slight impact of a helmetless head could lead to a serious brain injury or even be fatal.incident-clipart-accident

The audience-member also mentioned that he’s been riding 40 years without a helmet. I congratulate him for the accomplishment of never having had a serious accident. I too thought I would ride my bike for many years. But, unexpected things happen. One such incident happened to me. It’s why some of us wear safety gear.

The audience-member and I ended by agreeing on a point. We both understand that, during a serious impact, no helmet can protect the jelly-like brain, which exists inside a hard skull.

I understand there is considerable joy in riding totally free and unencumbered. Motorcycles are about freedom, and the principle of individual freedom is paramo61463unt for some people. Those of us who wear safety gear are concerned with the significant risk of riding with the lack of precautions. We still experience the feeling of the impressive freedom that comes from riding a motorcycle – just a bit less.

 

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Survivors SPEAK OUT! Courtney Clark

presented by

Donna O’Donnell Figurski

 

Courtney Clark Photo 2

Courtney Clark – survivor of Brain Injury & Motivational Speaker

 

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

Courtney Clark

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

Austin, Texas, USA

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

In the spring of 2011, at age 31, I discovered I had an AVM (arteriovenous malformation).

4. How did your brain injury occur?

An AVM is a congenital birth defect of the blood vessels. I actually had no symptoms and no warning signs, but I had been living with it for 31 years when doctors found it.

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

My oncologist actually found my AVM at my 5-year cancer-free scans! Because I didn’t have any symptoms (usually symptoms are headaches and seizures), I had no idea that I had it. I also learned that three aneurysms were within the AVM. Any one could have ruptured at any time.brain-20clip-20art-brain4

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

I flew to New York to be seen by one of the top neurosurgeons I could find. I had three brain surgeries.

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

I wasn’t in a coma. I woke up from surgery the first day, but I struggled with consciousness for almost two weeks.

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 didn’t have to do rehab, but I did have to teach myself how to read again over the course of about a month because I really struggled with comprehension.

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

visionThe main issues I struggled with right away were visual issues. I had a problem with depth perception, and, because of that, I couldn’t walk for several days – I could only walk a few steps at a time. For the next several months, I also had to work on reading and anything else that required visual comprehension.

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

My life the first year was painful. I was running a small nonprofit out of my home, and I found that I could barely stay awake long enough to do any work. I felt completely helpless. (I couldn’t even take myself to the bathroom.) Now, I’d say my overall life is better – going through this with a supportive husband by my side has shown me I chose the right partner (the second time around). Also, I have even more perspective on life.

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

Yoga! I am NOT a natural athlete like everyone in my family. But, in yoga, I had mastered the headstand. I could do not one but two cool headstands! I felt like a rock-star athlete for the first time in my life! When my neurosurgeon told me that I could no longer do Yoga th-1headstands (it sounds obvious now but caught me completely off guard at the time), it was the first time I really, truly wept. Like, I’ve been through so much, and now I can’t even do this ONE THING that brings me so much joy and makes me feel like a beast!

In a larger sense, I also miss that feeling of immortality that we all have when we’re young – when we think nothing bad could ever happen to us.

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

I’m so much more appreciative of my husband, my loved ones, and my life! Because of everything I’ve been through, I now get to research, write, and speak on resilience, and I love traveling the world to get to help other people.

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

These days, nothing!

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

One of the main things that helped me was volunteering and giving back to other people. (It’s a strategy I ALWAYS use to help me when I’m struggling with something.) Research shows that volunteering is one of the best ways to get perspective on our struggles.

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

My relationship with my husband, Jamie, has been affected – because I feel 100% certain that I’ve chosen the right life-partner. When I was diagnosed with cancer at 26, my then-husband wasn’t as supportive as I would have liked. The push in the direction to end my marriage was painful, but necessary. Jamie, my second husband, and I hadn’t even been married a year when the AVM was found. I was so worried that having to take care of me – take me to the bathroom, etc. – was going to hurt our new marriage. But, Jamie was, and continues to be, a most-supportive, caring partner.

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

I feel very lucky – I didn’t have any long-term changes to my social life. Short-term, yes; but long term, not really. I will say that, after my surgeries, I have a “life is short” feeling – I don’t put up with a lot of BS or unkindness from friends.

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

Image result for Free Cartoon Clip Art love life

My husband was my main caregiver. I don’t know if anyone can totally “get it” until he or she has been through it, but I always say that in some ways it’s almost harder to be the loved one than the patient. It was especially difficult for Jamie to deal with me because I had experienced the world of cancer also! Jamie didn’t always get to be the one to choose the treatment plan, but he had to just go along with whatever I chose. And, I got wheeled away, and I slept through the 10-hour surgery, but my husband was awake, pacing the floor the whole time!

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

Ten years from now, I want to continue traveling and speaking to groups to help them gain resilience and handle change and challenge.

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.

My biggest helpful hint is that helping someone else is a tool that EVERYONE can use. So often, we think that, if we’re struggling, we have nothing to give. And, we may feel drained, exhausted, or like “Why do I need to help somebody else? I’m still getting help?” or “How could I even help someone, with my life the way that it is?” But, giving doesn’t have to be directed downward – to someone less fortunate. When I was sick the first time, I kept up with my volunteer activities, and I found that it gave me a sense of personal power and accomplishment, even when I didn’t feel like I was accomplishing much in my everyday life.

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

My best advice is that healing and recovering from a brain injury isn’t a linear process. Before your brain injury, maybe you were like me: go-go-go, getting everything done, climbing the ladder, all about success. You can’t just “bounce back” after something like this. It’s a long, slow trudge, which our society doesn’t glamorize. But, the slow journey is really the only option, and that’s not all bad. It’s an opportunity to reprioritize and savor the smaller things (which I used to ignore).

 

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Courtney Clark – Survivor of Brain Injury – will be Keynote Speaker – BIAAZ Rays of Hope Conference – May 17, 2019, Phoenix, Arizona

 

Learn more about Courtney Clark on her website, Courtney Clark – Accelerated Resilience.

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Caregivers SPEAK OUT!

Bill Duwe  (caregiver for his son)

presented by

Donna O’Donnell Figurski

Bill Duwe Caregiver

Bill Duwe – Caregiver for son, Ray

 

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

Bill Duwe

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

Broken Arrow, Oklahoma, USA     wduwe@cox.net

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?

I am Ray’s father. He was 34 when he suffered a brain-stem contusion in a motor-vehicle 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?

Ray was released from the hospital on January 27, 2001. We shared caregiving with his wife until November 2001, when Ray moved to our house. My wife and I have been his main caregivers since November 2001. I was 60 years old.

Bill Duwe Wife & Son Ray IMG_6570 (2)

Bill Duwe and his wife – Caregivers for son, Ray

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

No, but my wife’s mother was requiring some assistance. Eventually, we were caring for her and Ray in our home. She passed away in 2007.

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

Yes, I was employed. My employer helped by allowing me to work from home a day or two a week. I worked for 2½ more years. Then it seemed better for me to retire.

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

Absolutely! Currently, I have eighteen volunteers who help with stretching exercises for Ray. I trained these volunteers. We exercise Ray twice a day on a physical therapy table. For seven of those exercise times each week, a volunteer comes to help. Exercise takes about 45 minutes. Some volunteers come once every week; some, twice a month; and some, once every two months – depending on their availability. This does wonders for everyone’s morale – my wife, Ray, the volunteers, and I are all uplifted in spirit.Volunteers

In addition, I employ a nurse for two hours to bathe, give medicines, help dress, and help exercise Ray twice a week. My wife will have knee-replacement surgery next month, so we will employ this nurse two hours a day, six days a week, during my wife’s recovery. Two of Ray’s children will also come to help us during her recovery.

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

We received ten days of family training on the rehab floor of the hospital before they released Ray. They trained us in physical therapy, occupational therapy, speech therapy, and all daily care. We did most of his care during those ten days.

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

Ray was in a deep coma. He did not respond in any way for one month. He partially opened his eyes exactly one month after the injury. We camped in the waiting room day and night. We took turns going home at night for a shower and an occasional night of sleep at home.

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?

Ray received inpatient therapy during the ten days of family training. After he was released from the hospital, we were able to get various periods of outpatient or home-health therapy for a few years. We have always been directly involved in any therapy.

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

Ray is a non-verbal quadriplegic. He requires complete 24-hour care. Ray’s ability to communicate is very limited. Frequently he can close his eyes for “Yes.” Sometimes he can shake his head for “No.” Occasionally he can smile, but the heavy doses of seizure medications have dulled his ability to show emotion.

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

There have been significant adjustments to our daily life. We made major accessibility accommodations. We have a wheelchair-van. We built a custom accessible home. I would not say life is better or worse. We learned how to adapt. We travel extensively – road trips and cruises. We are able to do what we want – it just takes extra planning and effort. We enjoy going to church, eating out, etc. Ray goes with us. Many of Ray’s friends have connected with us. Ray’s children are close to Ray and us.

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

We very much miss the old Ray.

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

It has provided opportunities to connect with and appreciate Ray’s friends. We enjoy sharing our experiences with other caregivers and friends we make in our travels and with therapy students.

15. What do you like least about brain injury?

The devastation to the survivor and his family

87747316. Has anything helped you to accept your survivor’s brain injury?

Ray’s demeanor indicates he has accepted his injury. Knowing he accepts it helps us accept it.

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

Our marriage is strong. Unfortunately, Ray’s marriage did not survive. Ray’s children are close to Ray and ready to help when needed. We may be closer to his children than we would have been otherwise.

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

We seldom attend church-class parties in a home because it is difficult, or impossible, to get Ray into most homes. Otherwise, we have an active social life. My wife and I each have social activities we attend individually.

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

In ten years, I will be 87. I expect to still be taking care of Ray in our home. I may need more help, but who knows? My health is good. I expect Ray, my wife, and I will be traveling.

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

  • Make the effort to find support, and work to keep support.
  • Take care of yourself and your life.
  • Remember, you know your survivor’s medical history better than any doctor does. Use your knowledge to help the doctor. (For instance, scar tissue in Ray’s lungs may be misinterpreted as pneumonia on an X-ray.)
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“We Still Have Him to Love” by Bill Duwe

 

 

I have written a book, “We Still Have Him to Love” by Bill Duwe. I wrote it to help other caregivers. It is available on Amazon.com.

 

 

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New News:    2019 Caregiving Visionary Award Finalist

presented by

Donna O’Donnell Figurski

th-1YAY! I am one of ten finalists for the 2019 Caregiving Visionary caregiver-word-clipart-1Award, so I’m still in the running. A great big THANK YOU to all who voted for me. Your votes helped immensely. YOU made this happen and I am so honored to be a finalist. Winners will be announced March 1st.

Thank you! Thank you! Thank you! THANK YOU!

 

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A Friend?
The Need for Better Understanding of Brain Injury
by
Alan Gregory

presented
by
Donna O’Donnell Figurski

Alan Gregory 1

Alan Gregory Brain Injury Survivor

 

I was working at my minimum-wage, 3- to 4-hours-per-day job when an old friend came in. He asked why I was working there and not at my former job. (I had been an accountant at a large manufacturing firm – a job I held for more than 30 years.) I told him I lost my job after I suffered a traumatic brain injury (TBI).

Of course, my friend didn’t know what a TBI was, so I explained it to him. He then assumed I must have been in a car accident. But, when I explained to him that I had slipped on ice and landed on my head, he rolled his eyes and moved on.

I wanted to grab him and tell him, “Yes, it’s true, and it totally messed up my life!”clipart-of-person-slipping-on-ice-7

I deal with my brain injury every day. I struggle with the fact that I can no longer financially support my family. Some days, I have to force myself to get up, after I have bounced around the house all night with my head not allowing me to sleep. I used to have a great, salaried job, at which I usually worked ten hours per day. Now, I can barely work a total of ten hours in a week. Ugh!

I honestly wonder what my friend’s reaction would have been if I had told him that I had a heart attack or a stroke or even cancer. I am sure that his reaction would have been sympathetic and understanding with an offer of “If I can do anything …”

k23633524

A little understanding and compassion go a long way.

Well, I don’t want his sympathy. We have survived these past two years without his help. A simple dose of understanding would have been preferable, rather than the perplexed look, the sudden turn and walk away, or the “Yeah, right” head shake that we survivors of brain injury all too often get from others.

 

 

Clip Art compliments of Bing.)

(Photos compliments of contributor.)

As I say after each post:

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.anim0014-1_e0-1

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VOTE for Me! – Caregiver Visionary Award

presented by

Donna O’Donnell Figurski

This is just an itty-bitty, tiny-teeny, itsy-bitsy newsletter because I want to share some exciting news with you.

I have been nominated for the “Caregiver Visionary Award,” which will honor five th-1caregivers who stand out in their caregiver world. Now frankly, I think all caregivers deserve this award, but, alas, only five will be chosen, and I hope I am one of them. David thinks I should be too. He nominated me.

I need your help. Only you can make this happen. Here’s how it works. In order to be chosen as one of the top ten finalists, I need votes. Internet votes! That’s it. Pretty easy. All you have to do is click on the link I posted below.

https://www.caregiving.com/ncc19/cva-donna-odonnell-figurski/

Voting ends at Midnight ET on February 25, 2019. So please HURRY!

Scroll to the end of my nomination.
Click on “Cast your vote.”
Takes you to a new page
Lists all nomineesplease-vote
Mark my name, Donna O’Donnell Figurski.
Click “VOTE!

See, that wasn’t so hard, was it?

On March 1, 2019, the winners will be announced. You’ll probably know right away because you will hear me squealing and jumping for joy. And now, I am going to cross my fingers until March 1st. pco5aerzi

ashdis kjdihio jsh pogwkp d wyqye. Oops! It’s really hard to type with crossed fingers.

Translation : Thank you so much from the bottom of my heart!

P.S. Phew! Thank goodness that’s done. I hate to ask for things!

 

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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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