TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘survivingtraumaticbraininjury.com’

Past Blast: “Brain Injury Resources – Unleashed Talents”

“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.

(Clip Art compliments of Bing.)

(Photos compliments of contributor)

 

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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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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:

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 lower right corner of your screen.

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Permission granted to “Reblog” my post.

(Clip Art compliments of Bing.)

(Photos compliments of ME.)

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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TBI Tales . . . . . . . . Mission Possible!

Mission Possible!

by Jennifer Stokley

presented

by

Donna O’Donnell Figurski

 

jennifer-stokely-survivor-052615

I CAN’T BELIEVE I DID IT!

I don’t go out very often since my brain injury – usually only with my big sister or my “gal pal” for support. But, my neighbor had a mission planned. (I have become good friends with my neighbor, and I trust her. Also, we are similar in age.)

Baby Shower

My neighbor’s granddaughter is having a baby, and the baby shower is planned soon. I adore her granddaughter, but I know I just am not up to attending something with fifty people. Most of the guests will be strangers to me. So, that’s where our mission came in.

I told my neighbor that I would pay for all the food she would need for the party and also have her help me pick out healthy food stuff for the baby as my shower gift.

Well, we headed out and had an amazing time! We shopped at two stores I was unfamiliar with, but knowing how much I trusted my neighbor, I didn’t have any anxiety. I only had curiosity and fun running in me.

Grocery Store

I even helped her find two things she couldn’t find anywhere, and I reminded her about something she would need badly for what she is making! (She left her list at home! LOL)

I remembered all of my purchased things and carried them out of my neighbor’s car, but my neighbor noticed I forgot my favorite thing of all. I left my coffee mug in her car! As I was running out to yell to her, she thwas already at my porch and smiling, with my coffee mug in her hand!

Just two years ago, I would have never had the courage to go out with someone I only knew from talking to when she’s hanging out clothes. But today I did it! We also made plans for two more outings …

 

 

(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! Itty-Bitty GIANT Steps

SPEAK OUT! Itty-Bitty GIANT Steps

Itty-Bitty GIant Steps for Blog

 

 

SPEAK OUT! Itty-Bitty Giant Steps will provide a venue for brain-injury survivors and caregivers to shout out their accomplishments of the week.

If you have an Itty-Bitty Giant Step and you would like to share it, just send an email to me at donnaodonnellfigurski@gmail.com.

If you are on Facebook, you can simply send a Private Message to me. It need only be a sentence or two. I’ll gather the accomplishments and post them with your name on my blog approximately once a week. (If you do not want your last name to be posted, please tell me in your email or Private Message.)

I hope we have millions of Itty-Bitty Giant Steps.

 

jennifer-stokely-survivor-052615

Jennifer Stokley – Survivor of Brain Injury

Jennifer Stokley (survivor) … I met a stranger at my door who was sent to do “bug home care” (no notice). I let him in to do his work. I asked questions and had him explain things I needed to misc_welcome2know. I have Severe Anxiety Disorder and huge panic attacks.  Strangers are a HUGE trigger; letting them into my home is even bigger! I handled it all – no anxiety; no nothing!

 

(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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