TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘TBI Survivor’

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

 

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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.

 

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(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.)
41UvDTIGD8L._SX326_BO1,204,203,200_

“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 …”

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.

 

 

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Survivors SPEAK OUT! …….. Alan Gregory

Survivors SPEAK OUT! Alan Gregory

presented by

Donna O’Donnell Figurski

 

Alan Gregory 2

Alan Gregory – Brain Injury Survivor

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

Alan Gregory

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

Charlevoix, Michigan, USA     ajgregory@chartermi.net

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

January 5, 2016     I was 52 at the time.

4. How did your brain injury occur?

I slipped on ice in our driveway while going to move my wife’s car. I had just gotten home from work on a Friday evening, and I went to get into her car. I stepped on a patch man slips and falls in waterof ice and flew up into the air, landed on my back, and then hit the back of my head on the concrete. I still remember that awful “Crunch” sound.

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

I had suffered a concussion when I was hit in the head by a softball while coaching, so I knew the symptoms and the feeling. My wife is a Registered Nurse, so she knew I had to rest, and she kept checking on me all the time. After a trip to the Emergency Room, I expected the symptoms to go away in a few days or so. The ER doctor said I would be OK in a week at most. I returned to work on Wednesday (four days after the fall happened) because I had so much work to do in my job.

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

I went to the Emergency Room at the time of my fall. I was released with orders to just rest for a few days and stay in dark, quiet areas. That was my treatment … nothing else.

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

No. I was only knocked out for a second or two.

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 did outpatient rehab at New Approaches Center. I had physical therapy, occupational therapy, speech therapy, and cognitive therapy. I was at New Approaches as a patient for almost a year, with visits three times/week.

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

I have a balance problem, which is even worse when I “crash.” In the beginning, my crashes would happen randomly, and I would get severe dizziness, nausea, and confusion. Over time, these episodes started to spread apart, and now they hit when I am fatigued or overstimulated – usually 3-4 times/week at least. When I crash, my wife helps me into bed, and I usually nap two to three hours. Sometime, I wake up and feel good to go; sometimes, I am still very listless, and my brain feels like it is operating at about 20% at best.download_image

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

Ha! Does anyone every answer “No”? Yes – life has changed dramatically! There are lots of adjustments and lots of compromises, but we do what we can do. First of all, I lost my job after 30 years with the same company. What really ticks me off about that is that I worked at home (company laptop) for five months after my traumatic brain injury (TBI). I tried to return to work, but the lights and general office-noise just hit me hard, and twice they found me on the floor throwing up. After that, I was told not to come back until I had a “clean bill of health from a doctor.” Yeah, right! I would work as long as I could on the laptop (30-40 mins at first) and then go lie down in dark and quiet. I would then come back later and try some more work. I was able to keep things going and get my reports out on time. I even helped do the monthly closing for each month, and I got things done in a timely manner. Sometimes I would work until I threw up, rest for a while, and then come back for more. I did everything I could and was assured by Human Resources that my job was safe. I asked about coming back part-time (as my doctor recommended) or even about working with no bright lights or noise, but I was told the company did not do that! So, I hit the 6-month mark from the date of my last work day IN the office (not counting my work at home – since I was told that “no one asked me to do that”), and they put me on disability. I was told I had 6 months from that date and I would be released. I was improving, but at a relatively slow pace. I could come back and try full-time – something every doctor and therapist said was a bad idea. But, if I did that, I lost all disability claims for the future. So, they let me go and dropped my insurance, and that was it.

My life may have changed for the better. I think I am a much more patient and caring person NOW. I stop and think about how people might be feeling and how I can help in some way. I am not stressed-out like I was because of my job … but my family has struggled financially from my losing my job. Life is different. I struggle to move on totally, as I still have a lot of deep-seated issues with people who did not help me at my former employer and with “friends” (at least I thought they were) who have nothing to do with me after my TBI. That is probably the next biggest thing – how people treat me or avoid me. Why? What did I do? You think I like being this way? I wish I could go back to work.

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

I miss my pre-TBI energy level … I felt like I could work hard for 9-10 hours in my job and then come home and help around the house. Now, I have to watch what I do and know that I may crash later.

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

I like having more time with my family. My get-so-caught-up-in making a living and doing my job meant that life just got away from us sometimes. It has been nice to get to spend more time with my wife and my boys – even though one is now in the Army. I feel like we have a better relationship.

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

I used to consider myself smart and very good at my job. I was an accountant, and I worked for years to get to where I was. I went to night-school for over ten years to finish up my Bachelor’s Degree, and I was three classes into my Master’s schedule. I had a 3.98 GPA when I fell.1440606034164831363did-you-know-auditors-are-usually-accountants-work-in--809089-hi

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

Reading books from people like Amy Zellmer and so many other wonderful people helped me to know that I was not alone. But, joining Facebook groups like Amy’s “TBI Tribe” really helped so much. I get to talk to people, and I always get their suggestions and ideas on things to do. Dr. Glenn Johnson and all the therapists at New Approaches helped me so much.

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

Of course. My TBI has changed the way my wife and I do things – simple things, like mowing the grass or shoveling snow. I have to watch what I do and be honest with myself on how I feel. I do think the TBI has made me open and easy to talk with.

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

Yes. We go out with a very small group of friends, and we had to prepare them in case I crash. They have all witnessed it now, and some are very helpful. Some also just kind of back-off. I am 6’2”, and my wife is only 5’2”, so she sometimes needs some help with me.

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

thMy wife is my main caregiver. She is amazing, and I would be lost without her love and support. She is my rock. I know the things to do as a caregiver, but I also know how hard it can be.

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

I take things more as one day, or maybe a few days, at a time now. I am much more flexible, and I do what I can each day. I hope I am still improving and helping others in ten years.

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.

BE PATIENT, so give yourself time. Learning to live with a TBI takes a while … not days or weeks … but longer. Love each other.

Alan Gregory 3

Alan Gregory – Survivor of Brain Injury

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

My advice is to not take personally the actions of others, but it’s easier said than done. I still feel bad that people whom I called close friends treated me like I had the plague after my fall. But, they just don’t get it. WE do! So, look to people who really understand and get it.

(Clip Art compliments of Bing.)

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Past Blast: Mansion Dancing Under the Stars

“TBI Tales: Mansion Dancing Under the Stars”

(originally published April 26, 2014)

presented by

Donna O’Donnell Figurski

mansion-at-westport

David and I met on the dance floor when I was 16 years old. He was 17. We fell in love under a strobe light. Through our married years, we danced at weddings and at parties, but when David’s Traumatic Brain Injury left his body as limp as Raggedy Andy, I never dreamed that David and I would ever dance again. But, during a recent trip to Westport, Massachusetts, to spend time with our son, Jared, his fiancé, Emily, and her family, we found ourselves staying in a mansion … only feet from the Atlantic Ocean. Our host, dancers-thSusan, was beyond gracious, concerned about our every comfort. On our second night there, she threw a big family party on her extensive patio and even more expansive grounds overlooking the ocean; and she invited us. We stopped in about midnight.

The partygoers were huddled around the fire-ring … music still blaring. Jared and Emily began to dance on the patio. I swayed. David sat in a tall patio chair. Then the unthinkable happened. David asked me to dance. I hadn’t expected that! David can barely walk – dancing had not been on his radar for more than seven years. I looked at him expectantly. Was he kidding, being facetious? ballroom_dancing_stars_swinging_lg_clrNo! With a huge grin, I answered, “Yes!”

We didn’t Cha-Cha or Swing, as we had learned in our Ballroom Dance classes. We didn’t attempt the Fox Trot, or even the Waltz, though Paula, our dance instructor after David had his TBI (another story), would have been proud of us if we had. But, we did our own dance. We swayed back and forth – never moving our feet. We call it the “TBI Sway.” We swayed with my head resting against David’s shoulder and his hand gently placed at the small of my back. We swayed with David holding on to me for dear life … for balance. We danced under the stars to an old favorite, “Unchained Melody” by The Righteous Brothers, with the sounds of ocean waves lapping the shore, with smiles on our lips, and remembrances of days gone by … and the promise of our days ahead.dance under stars

anim0014-1_e0-1As I say after each post:

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If you have a story to tell, please contact me at donnaodonnellfigurski@gmail.com

Survivors SPEAK OUT! . . . . Robb Anthony Filippes

Survivors SPEAK OUT! Robb Anthony Filippes

presented by

Donna O’Donnell Figurski

 

Rob Filippes 052018

Robb Anthony Filippes – survivor of brain injury

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

Robb Anthony Filippes

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

Evansville, Indiana, USA

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

May 22, 2016

4. How did your brain injury occur?

I had a full cardiac arrest.

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

I realized I had a problem when I woke up, and I had to go to HealthSouth Deaconess Rehabilitation Hospital.

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

Well, I was on life-support … cartoon+infus

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

Yes. One week

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)?

Yes. I was an inpatient at HealthSouth.

How long were you in rehab?

One month

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

I lost my short-term memory. Balance is a problem. Sometimes I need to use a cane or a walker. My personality changed; I became nicer.

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

My life is better.

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

Nothing. I was a drug addict for 35 years. (I’m 51 years old.)

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

I greatly appreciate that I’m still functioning. I’m very lucky.

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

I dislike my short-term memory loss.

14. Has anything helped you to accept your brain injury?Shrink 2

I still have a hard time accepting my brain injury. I go to a “shrink” now.

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

My brain injury actually made my home life better. I was about to lose my marriage over it. (I lost my first marriage from it.)

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

Robb Anthony Filippes & Wife

Survivor – Robb Anthony Filippes & wife

Yes. I don’t see anyone.

17. Who is your main caregiver?

My wife

Do you understand what it takes to be a caregiver?

Not really. She does everything for me and our family.

18. What are your plans?

I hope to help others with addiction.

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

Rob Filippes Survivor 2 0520118

Robb Anthony Filippes – survivor of brain injury

I hope to still be alive and to have helped people, even if it’s one person.

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.

Get counseling right away

20. What advice would you offer to other brain-injury survivors?

Never Give UpDon’t give up!

Do you have any other comments that you would like to add?

All brain-injured people are in my prayers.

 

(Clip Art compliments of Bing.)

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