TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Traumatic Brain Injury’

Survivors SPEAK OUT! . . . John Bradshaw

Survivors SPEAK OUT! . . . John Bradshaw

presented

by Donna O’Donnell Figurski

 

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

John Bradshaw

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

Apple Valley, California, USA

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

July 4, 2012     Age 56

4. How did your brain injury occur?

Car accident

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

The impact was immediately known to be serious. I was in a coma at the scene of the accident.

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

I was air-lifted from the scene of the accident. My condition was assessed. I had CT (computerized tomography) and MRI (magnetic resonance imaging) scans, and I was put on a respirator.

7. Were you in a coma?

Yes

If so, how long?

Deep coma: 1 week; sleep coma: 3 weeks

8. Did you do rehab?

Yes

What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)?

I had my therapies – occupational, physical, and speech – both as an inpatient and as an outpatient.

How long were you in rehab?

My therapies basically lasted 1+ years. I still do physical therapy every year to help with balance and strengthening.

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

I have problems with balance and perception. I have a personality disorder, a mood disorder, memory-loss, and nervousness, to name a few issues.

10. How has your life changed?

There is no normal. Every day is different.

Is it better?

No

Is it worse?

Yes

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

In general, I miss knowing where I am, my quick train-of-thought, and my memory.

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

I enjoy the people I have connected with through support groups and rehab.

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

I dislike not knowing things in general and not understanding why I am like this.

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

Yes. Jesus sent me back to let everyone know he and his father are alive. They love us, so it doesn’t matter what church you go to. They want to see us come home.

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

Yes

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

Yes. I find it very difficult to interact with others now.

17. Who is your main caregiver?

My wife

Do you understand what it takes to be a caregiver?

No

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

I have no plans for the future. I take it one day at a time.

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.

(No answer)

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

Life will never be the same. Take it one day at a time, and believe it does get better with time. My wife’s favorite reminder motto is: “I am not what has happened to me … I am what I choose to become.”

 

 

(Photos compliments of contributor.)

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New News: . . . . . . . . . . . . . . . . . Book Excellence Award!

YAY! I received the Book Excellence Award!

Prisoner without Bars: A Caregiver’s Tale
(a heart-wrenching, yet sometimes, hilarious love story)

presented by

Donna O’Donnell Figurski

FFI am incredibly excited to announce that I have been recognized as a Book Excellence Award Finalist for my book, Prisoners without Bars: A Caregiver’s Tale in the Caregiving Category.

Out of hundreds of books that were entered into the Book Excellence Awards competition, my book was selected for its high quality writing, design and overall market appeal. (Click Book Excellence Awards link above and scroll to page 21.)Happy Girl Book Excellence Award

Out of hundreds of books that were entered into the Book Excellence Awards competition, my book was selected for its high quality writing, design and overall market appeal.

To view my complete award listing, you can visit: Prisoners without Bars: A Caregiver’s Tale Book Excellence Honoree.

thThe book was released in 2018 and is about me, a “forever” caregiver for David, my high school sweetheart, best friend, and spouse after he had a traumatic brain injury. David was not expected to survive his three brain surgeries in January 2005, but he DID! Triple YAY!

Prisoners without Bars: A Caregiver’s Tale is perfect for survivors of brain injury and their family and friends. It will also appeal to anyone who wants to curl up and read a heart-wrenching, yet sometimes hilarious love story.

You can get a copy for yourself at:

Amazon

Barnes and Noble

Indie book store

All reviews and ratings are greatly appreciated at:

Goodreads

Amazon

Barnes and Noble

(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.

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SPEAK OUT! NewsBit . . . . . . . Brain Research in Mice May Lead to the Treatment of PTSD and Depression in Humans

Brain Research in Mice May Lead to the Treatment of PTSD and Depression in Humans

presented by

Donna O’Donnell Figurski

A young Boston University professor, Steve Ramirez, a neuroscientist, has identified cells of a mouse brain that enhance the positive or negative scientist-clip-art-41a38614afbd47caca00c32a563f44defeelings of a memory.

Stimulating cells that enhance positive feelings can suppress or deaden the trauma associated with a bad memory. In contrast, stimulating cells that enhance negative feelings makes a bad memory feel worse.

The hippocampus in both the mouse brain and the human brain is the region of the brain responsible for storing memories, including all the details and emotions associated with them. Each memory activates a unique combination of cells of the hippocampus.  Some of the cells affect emotion and behavior.

mouse-clip-art-grey-pink-mouse-mdRamirez and his collaborators (including first author Briana Chen of Columbia University) used genetically engineered mice whose neurons glow when they’re activated. Those cells can later be artificially activated with laser light. The team found that a negative memory (like getting a mild electric shock to the feet) activates cells at the bottom of the hippocampus.  A positive memory (like being in the presence of a female mouse) activates cells at the top of the hippocampus.

They then were able to stimulate those same cells with a laser.  When the bottom cells of the hippocampus were activated, the mouse behaved (freezing and/or avoidance behavior) as if it were recalling the negative memory of the shock. Stimulation of the cells in the top region of the hippocampus reduced the avoidance response.51wUt-P+FKL._SL500_

This is basic research, but it is a significant first step in the eventual development of treatments for PTSD (post-traumatic stress disorder), anxiety, and depression.  (Full story)

(Clip Art compliments of Bing.)

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Survivors SPEAK OUT! . . . . . Steven A. Marderosian

Survivors SPEAK OUT! Steven A. Marderosian

presented by

Donna O’Donnell Figurski

 

Steven A. Marderosian Before TBI 20190429_120335

Survivor – Steven A. Marderosian Pre-TBI

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

Steven A. Marderosian

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

Barrington, Illinois, USA; E-mail: steven@marderosianlaw.com

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

February 28, 2018; I was 49 years old.

4. How did your brain injury occur?

AVM (arteriovenous malformation) rupture – hemorrhagic stroke

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

My wife heard me sounding confused while talking to someone on my phone. Later she saw me looking at my phone as if I didn’t know what it was or how it worked. Then I started to notice my left arm going numb, and then, my left leg. I tried to “walk it off,” but I crashed to the floor.

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

My wife raced me to the Emergency Room, where I triggered a “stroke alert” response. I recall only the very start of it. My wife was kept outside a curtain, so I don’t know any of the details before I stabilized.

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

By the grace of God, no

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?

Towards end of two weeks in the Intensive Care Unit/neurology (and removal of my AVM by rare cross-craniotomy brain surgery), I had physical therapy, occupational therapy, and speech therapy evaluations in the regular hospital. I spent two more weeks in a rehab hospital for physical, occupational, and speech therapies. I then moved home with six more weeks of physical therapy and occupational therapy in a partial admission “day rehab” at the same rehab hospital. My total was more than two months of rehab.

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

My left side was paralyzed from the shoulders down – it was near total from the ribcage down. (I had no balance – I couldn’t stay up on all fours.) My left shoulder/arm/hand was moderately impaired. I have no real cognitive deficits per se, but my mental processing is disabled in high-level speed and volume capacity. My AVM was at the border of the frontal and parietal lobes, bleeding into the frontal lobe in the right hemisphere. It fractured me emotionally.

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

surfer-boy-clipart-1It’s a mixed bag. I got up on a board and surfed just three months “post op” (against a “no contact sports” order). I’m physically stronger and even faster than I was pre TBI. But, my mental processing speed and capacity are still disabled. A bipolar diagnosis a few years pre TBI (likely due to progressive blood flow abnormality) appears to have been rectified by the AVM removal. But, while my mood is more stable, I still struggle to figure out my new personality. My general emotional state is different and strange.

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

I miss the lightning-fast mental processing and the seemingly limitless volume capacity. I miss not having to relearn every maneuver in black belt karate and fighting, downhill (telemark) skiing, and all other physically demanding things I’d been doing. I miss the 6-6.5 hours of sleep per night without ever napping or feeling tired.

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

I like that I care about the real suffering in the world (i.e., not my own, by comparison), in the midst of which I lived and rehabbed. I like having a far more stable mood and seemingly being cured of bipolar disorder. I’m looking forward to this second chance to fix past mistakes and live as God wants me to. And to never, ever, fear anything in the world again – other than God.

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

I dislike needing way too much sleep and always being tired no matter what I do or don’t tired-clipart-they-7do. I don’t like figuring out my new altered personality, my future career, and even my likes and dislikes. I don’t like having to relearn every advanced physical maneuver and regaining my previous mental processing speed and volume capacity.

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

I have been greatly helped by my undying (and now bulletproof) faith in Jesus Christ; by my eldest son, who is bipolar (now I want him scanned for an AVM too) and is the only one in my family who understands my continuing emotional turmoil; and by the support of my close friends in Christ and by my BFF of 45 years.

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

I look, speak, and act “fine,” so family (except my eldest son) and others don’t really understand my continuing emotional turmoil and new personality. So, I keep my inner feelings mostly to myself (and to my BFF, to my eldest son, to my bible study group, and to my therapist).

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

I was kind of a homebody before, so my social life is not much different. But, busy, noisyno-noise-clipart-1 places, like crowded restaurants, create a sensory overload that can become overwhelming, especially after high-stress or high-volume days. It’s like I can hear every individual sound of 100 people, intercoms, TVs, and devices all blaring at once. I just want to scream, “Will everyone please just shut the f#@k up!?”

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

I’m so undeservedly blessed that I don’t have or need a caregiver anymore. My wife had to do it for the first few months after I moved back home, but I’ve been mostly on my own since then. My “emotional caregivers” are probably my BFF, my eldest son, my bible study group, and my therapist.

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

I can’t tolerate the blatant dishonesty and BS involved in practicing law anymore (especially litigation, where it’s the worst) – not my own, but that of others who simply “double down” when I catch them and call them out. Far too many “judges” seem even worse than the lawyers. My BFF and I have done construction rehab work, and we just launched a demolition and construction company. In ten years, I hope it will be my main source of income, with my eldest son working with us and me taking only select legal work “on the side” (which sounds like Heaven). I wrote a book on God’s miracles in m

Steven A. Marderosian After TBI 20190429_113920

Survivor – Steven A. Marderosian Post-TBI

y experience. I hope to write more and to speak to inspire and help others overcome their crises and follow Jesus Christ.

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 try to force yourself back into who you were; you simply aren’t that person anymore and never will be again. I always say that as well as I’m doing now, “everything is different” somehow. Embrace who you’ve become and the power your experience and resilience have given you to overcome any obstacle. And, help others do the same.

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

Thank God constantly for every breath you take; every blessing you have; and even every challenge, setback, and outright sorrow you experience. All these things work together to achieve God’s will to make you stronger and better as the person He wants you to be. And never, ever, sweat the “small stuff” again – life’s just too short.

With all God’s blessings to all survivors everywhere,

Steven A. Marderosian

(Clip Art compliments of Bing.)

(Photos compliments of contributor)

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What is your name? (last name optional)

Steven A. Marderosian

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

Barrington, Illinois, USA; E-mail: steven@marderosianlaw.com

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

February 28, 2018; I was 49 years old.

How did your brain injury occur?

AVM (arteriovenous malformation) rupture – hemorrhagic stroke

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

My wife heard me sounding confused while talking to someone on my phone. Later she saw me looking at my phone as if I didn’t know what it was or how it worked. Then I started to notice my left arm going numb, and then, my left leg. I tried to “walk it off,” but I crashed to the floor.

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

My wife raced me to the Emergency Room, where I triggered a “stroke alert” response. I recall only the very start of it. My wife was kept outside a curtain, so I don’t know any of the details before I stabilized.

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

By the grace of God, no

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?

Towards end of two weeks in the Intensive Care Unit/neurology (and removal of my AVM by rare cross-craniotomy brain surgery), I had physical therapy, occupational therapy, and speech therapy evaluations in the regular hospital. I spent two more weeks in a rehab hospital for physical, occupational, and speech therapies. I then moved home with six more weeks of physical therapy and occupational therapy in a partial admission “day rehab” at the same rehab hospital. My total was more than two months of rehab.

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

My left side was paralyzed from the shoulders down – it was near total from the ribcage down. (I had no balance – I couldn’t stay up on all fours.) My left shoulder/arm/hand was moderately impaired. I have no real cognitive deficits per se, but my mental processing is disabled in high-level speed and volume capacity. My AVM was at the border of the frontal and parietal lobes, bleeding into the frontal lobe in the right hemisphere. It fractured me emotionally.

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

It’s a mixed bag. I got up on a board and surfed just three months “post op” (against a “no contact sports” order). I’m physically stronger and even faster than I was pre TBI. But, my mental processing speed and capacity are still disabled. A bipolar diagnosis a few years pre TBI (likely due to progressive blood flow abnormality) appears to have been rectified by the AVM removal. But, while my mood is more stable, I still struggle to figure out my new personality. My general emotional state is different and strange.

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

I miss the lightning-fast mental processing and the seemingly limitless volume capacity. I miss not having to relearn every maneuver in black belt karate and fighting, downhill (telemark) skiing, and all other physically demanding things I’d been doing. I miss the 6-6.5 hours of sleep per night without ever napping or feeling tired.

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

I like that I care about the real suffering in the world (i.e., not my own, by comparison), in the midst of which I lived and rehabbed. I like having a far more stable mood and seemingly being cured of bipolar disorder. I’m looking forward to this second chance to fix past mistakes and live as God wants me to. And to never, ever, fear anything in the world again – other than God.

What do you like least about your brain injury?

I dislike needing way too much sleep and always being tired no matter what I do or don’t do. I don’t like figuring out my new altered personality, my future career, and even my likes and dislikes. I don’t like having to relearn every advanced physical maneuver and regaining my previous mental processing speed and volume capacity.

Has anything helped you to accept your brain injury?

I have been greatly helped by my undying (and now bulletproof) faith in Jesus Christ; by my eldest son, who is bipolar (now I want him scanned for an AVM too) and is the only one in my family who understands my continuing emotional turmoil; and by the support of my close friends in Christ and by my BFF of 45 years.

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

I look, speak, and act “fine,” so family (except my eldest son) and others don’t really understand my continuing emotional turmoil and new personality. So, I keep my inner feelings mostly to myself (and to my BFF, to my eldest son, to my bible study group, and to my therapist).

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

I was kind of a homebody before, so my social life is not much different. But, busy, noisy places, like crowded restaurants, create a sensory overload that can become overwhelming, especially after high-stress or high-volume days. It’s like I can hear every individual sound of 100 people, intercoms, TVs, and devices all blaring at once. I just want to scream, “Will everyone please just shut the f#@k up!?”

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

I’m so undeservedly blessed that I don’t have or need a caregiver anymore. My wife had to do it for the first few months after I moved back home, but I’ve been mostly on my own since then. My “emotional caregivers” are probably my BFF, my eldest son, my bible study group, and my therapist.

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

I can’t tolerate the blatant dishonesty and BS involved in practicing law anymore (especially litigation, where it’s the worst) – not my own, but that of others who simply “double down” when I catch them and call them out. Far too many “judges” seem even worse than the lawyers. My BFF and I have done construction rehab work, and we just launched a demolition and construction company. In ten years, I hope it will be my main source of oncome, with my eldest son working with us and me taking only select legal work “on the side” (which sounds like Heaven). I wrote a book on God’s miracles in my experience. I hope to write more and to speak to inspire and help others overcome their crises and follow Jesus Christ.

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 try to force yourself back into who you were; you simply aren’t that person anymore and never will be again. I always say that as well as I’m doing now, “everything is different” somehow. Embrace who you’ve become and the power your experience and resilience have given you to overcome any obstacle. And, help others do the same.

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

Thank God constantly for every breath you take; every blessing you have; and even every challenge, setback, and outright sorrow you experience. All these things work together to achieve God’s will to make you stronger and better as the person He wants you to be. And never, ever, sweat the “small stuff” again – life’s just too short.

 

With all God’s blessings to all survivors everywhere,

Steven A. Marderosian

 

So, Whaddya Think? . . . . . . . . . Do Motorcycle Helmets Protect the Brain?

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.

 

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 intact with your friends. It’s easy! Click the “Share” buttons below.

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

(Clip Art compliments of Bing.)

(Photos compliments of contributor)

 

Caregivers SPEAK OUT! Bill Duwe

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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TBI Tales . . . . . . . . . . . . . . . A Friend? The Need for Better Understanding of Brain Injury

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 …”

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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.)

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