TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘“Prisoner Without Bars: A Caregiver’s Tale”’

Caregivers SPEAK OUT! . . . Heather Sivori Floyd . . . Caregiver for her son, TJ

 

 

Caregivers SPEAK OUT!

Heather Sivori Floyd (caregiver for her son, TJ)

presented by

Donna O’Donnell Figurski

 

Heather Sivori Floyd – caregiver mom to her son, TJ

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

Heather Sivori Floyd

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

Oldham County, Kentucky, USA

3. What is the brain-injury survivor’s relationship to you?

He (TJ) is my son.

How old was the survivor when he/she had the brain injury?

TJ was 7 years old.

11 TJ Floyd

TJ – Brain Injury Survivor – bicycle accident

What caused your survivor’s brain injury?

TJ was riding his bicycle when he wrecked into the back of his brother. He flipped over the handle bars and hit his head on the concrete. He went to “sleep” and never woke up until days after his emergency open brain surgery.

4. On what date did you begin care for your brain-injury survivor?

April 21, 2010

Were you the main caregiver?

Yes

Are you now?

Yes

How old were you when you began care?

Age stinks. I’d rather not discuss it. LOL!

TJ and Mom Heather Sivori Floyd

TJ – Brain Injury Survivor & his Mom, Heather Sivori Floyd

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

Yes – my three other children. I was also pregnant at the time.

6. Were you employed at the time of your survivor’s brain injury?

Yes

If so, were you able to continue working?

Yes – part time from home.

7. Did you have any help? Mother-in-Law

My mother-in-law moved in to help with my other children so I could care full-time for TJ with his therapy and doctors.

If so, what kind and for how long?

Well, she is still here.

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

Immediately

9. Was your survivor in a coma?

I’m not sure of the medical term, but he was unresponsive until several days after his brain surgery.

If so, what did you do during that time?

I slept beside TJ in a chair. I was three months pregnant and heartbroken at the fear of the unknown. What was it they called it? . . . Ah yes, “the new normal.” I was trying to figure out what that meant. You don’t actually “get it” until years later.

14 TJ & Mom Heather Sivori Floyd copy

TJ – Brain Injury Survivor & Mom, Heather Sivori Floyd

10. Did your survivor have rehab?

Yes

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

Physical, occupational, and speech therapies; also, hippotherapy (the use of horseback riding to improve balance, coordination, and strength)

How long was the rehab?

TJ still goes to therapy.

Where were you when your survivor was getting therapy?

With TJ

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

brain-injury-imageEverything. TJ’s brain bleed damaged the whole left side of his brain and parts of the right. He was left with severe impairments, specifically in speech, language, memory, and cognitive function. He has safety issues. Because of attention, safety, and balance issues, he has trouble walking without hands-on help constantly. He also has memory problems, speech problems, vision problems, physical issues from having hemiparesis (weakness on one side), and a lot more.

12. How has your life changed since you became a caregiver?

Things that mattered to me prior his accident are non-issues to me now. I often times feel I can talk with doctors and therapists better than I can with most people my age. It can be lonely, difficult, and frustrating at times to find common connectors in my personal relationships with friends and family. Some weeks are packed full of appointments. I’m drinking so much coffee I think my system will crash. Just this past week, I knocked out four appointments in one day. The most I’ve done in one day has been seven.

Is it better?

I would say yes – my life is better. Even though this is the most challenging task of my life, my son is innocent, happy, and laughs a lot. I believe having the privilege to care for my child, who is special needs, has been the most rewarding love one can experience. The impact special-needs children make are life-long. You learn so much through them in how they view the world.

Is it worse?

No parent ever wants this for his or her child. That being said, my life is better because of the profound true joy my son has brought me. The worst part, I would say, is having struggles that are hard to overcome. Watching him struggle is hard. I do whatever I can to help him when this happens. Also, the stress of future planning is scary and overwhelming.

18 TJ & Mom Heather Sivori Floyd copy

Heather Sivori Floyd & her son, TJ

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

Our conversations. Most of the time, our conversations now are basic – food, eat, play a game, etc. I miss those conversations with my child that went beyond basic needs.

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

Oh gosh, a child like TJ changes you in a profound way. The love you have in your heart for your child and others like him or her is something that is hard to put into words. I want to protect all of them forever. The world is full of evil people who would take advantage. I also enjoy trying to help others – to make it easier for the family who comes after us. There will always be another family. I’ve also learned to let the little things slide because, at the end of the day, they are just that – little.

15. What do you like least about brain injury?

Everything. It’s unrelenting and nasty. It takes a lot and rarely gives anything back.

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

Yes – TJ is happy. It is hard to justify my being sad or my crying all the time when he is happy. He lives in the now – not for tomorrow or the day before.

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

1-divided-path-tracie-kiernanYes – especially my personal friendships and my relationships with family. I think we are on different paths in life now. While they talk of work and social events, I am constantly thinking What can we do to make it better for TJ and others going through this? My closest friends are now the caregivers and survivors I’ve met locally. We work together locally to make a positive change for the brain-injury community. I also work with an amazing team of ladies who help me run two support-groups for survivors and caregivers. I started my first one seven years ago. I was scared after TJ’s brain injury, and I needed to know I was not alone. I needed hope. The groups grew to over 30,000, and the rest is history. The friendship we have is unbreakable. Shout-out to my amazing admins and friends: Melissa, Shauna, Margie, Mary, Michael, Eddie, and Alex. Love you all! We’ve met many who have inspired us in this journey.

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

Um, what social life?! Seriously, I have no social life. It’s too hard to connect with others.

19. What are your plans?

My #1 plan is finding the best long-term situation for TJ that will ensure the best care he can have when we can no longer do so. Personally, I also plan to continue making a difference locally. We have several projects we are working on, and I have some more ideas to help. I ALWAYS have an idea. I’m always thinking big. Nothing brings me greater joy than helping others. It is important for families to know they aren’t alone and that people care enough to try and make it better. I try to do my part because of my son and the many we have met.

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

I hope to still be laughing and loving the small joys in life with TJ. Hopefully, we will have made a big impact locally and beyond for the brain-injury community.

20. What advice would you offer other caregivers of brain-injury survivors? Never Give Up

Never give up. Let the small things go. Love deeply, and give your all. If you don’t, one day you will wish you had. Be the voice for your loved one. Never let “no” be an obstacle; there is always a way. If the door closes, kick it open. Most importantly, hang on when the days are hard and you feel you cannot go on. You can, and your survivor needs you to. Connect with other caregivers so you don’t feel like you walk this path alone – because you don’t. There are many who walk it with you daily

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

I think I’ve said what’s important for caregivers to know.

 

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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SPEAK OUT! . . . . . . . . . . . . . . . Faces of Brain Injury . . . . . . . . Blaine Stanziana (survivor)

SPEAK OUT! Faces of Brain Injury – Blaine Stanziana (survivor)

presented

by

Donna O’Donnell Figurski

Brain Injury is NOT Discriminating!

bigstock-cartoon-face-vector-people-25671746-e1348136261718It can happen to anyone, anytime, . . . and anywhere.

The Brain Trauma Foundation states that there are 5.3 million people in the United States living with some form of brain injury.

On “Faces of Brain Injury,” you will meet survivors living with brain injury. I hope that their stories will help you to understand the serious implications and complications of brain injury.

The stories on SPEAK OUT! Faces of Brain Injury are published with the permission of the survivor or designated caregiver.

If you would like your story to be published, please send a short account and two photos to me at neelyf@aol.com. I’d love to publish your story and raise awareness for Brain Injury.

Blaine Stanziana (survivor)

Blaine Stanziana – Brain Injury Survivor

My story begins after a brain injury in 1979 at age 21. I developed epilepsy that went undiagnosed for eleven years. I had over 60,000 complex partial seizures; then I had a grand mal seizure. Falling six feet to a cement floor in 1988, I had a subdural hematoma that caused my second brain injury.

Here is my neck, which was done in 2007.

13557847_10209433750178851_6480153340725477890_n   13532957_10209433749178826_7429747293014904664_n13559143_10209433746178751_4503340091034294199_o

That’s three inches of bone from my left leg in the center of the sixteen screws. There is hip bone (two inches) in there as well. I was on the table for fourteen hours. I spent five years sleeping in a chair and a year begging for death. I could not talk for over a year because they split my vocal cords. But, I am alive, married for 35 years, and doing great!

Blaine Stanziana & Wife

Brain Injury Survivor, Blaine Stanziana and his wife

I coined these two sayings over 35 years ago:

“A head injury comes with a life sentence, and the only treatment for a brain injury is … HOPE.” “You cannot be defeated by what happens TO you – only by what happens WITHIN you.”

“It’s All in Your Head” by survivor, Blaine Stanziana

Blaine is the author of “It’s All in Your Head.”

Thank you, Blaine Stanziana, for sharing your story.

(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 Commentanim0014-1_e0-1 below this post.

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

If you like my blog, share it intact with your friends. It’s easy! Click the “Share” buttons below.

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Survivors SPEAK OUT! Bonnie Weikel

Survivors SPEAK OUT!  Bonnie Weikel

presented by

Donna O’Donnell Figurski

Bonnie Weikel – Brain Injury Survivor

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

Bonnie Weikel

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

New Bethlehem, Pennsylvania, USA

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

I was 47. My brain hemorrhage was in 2004.

4. How did your brain injury occur?

I had a subarachnoid hemorrhage (blood leaking into the space between two of the membranes that surround the brain; mine was from a ruptured brain aneurysm). I always like saying the correct medical terminology because I can actually remember how to spell it. For the majority of the time, I refer to it as “My head blowing up.” I also had a stroke during my craniotomy.

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

I was aware of my problems after I woke up from surgery. (The doctor wasn’t able to guarantee what kind of shape I would be in if I survived the surgery.)

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

First, the hospital ruled out a stroke, and, because I complained of “the headache from hell,” they did a CT (computerized tomography) scan and found the bleed on my brain. They packed me up and transported me to Allegheny General Hospital in Pittsburgh, where I had my brain surgery done.

operating-theatre-illustration-surgeon-patient-hospital-41734906.jpg7. Were you in a coma? If so, how long?

No, thank God. I recognized everyone when I came out of surgery. I just couldn’t remember who was there to visit from one minute to the next. My daughter took pictures of me with everyone who came to see me.

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 was in inpatient therapy for a month and then in outpatient therapy for about five weeks. I had to learn to do everything all over again – starting with feeding and dressing myself.

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

I have short-term memory loss and issues with balance, vision, and hearing. I have worked very hard over the past ten years to get to where I am today, and I did it all by myself.

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

My life has changed dramatically. It is better. I love the “new” me much better than the old version. I also found out who my true friends are.

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

I did lose one thing I used to love to do. I used to sew for hours. I had my own sewing business. I made anything from window treatments to wedding gowns, and I was good at it. I lost all desire to sew; it is no longer something I love to do. It is more of a chore.

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

I like that I am back in school. I am taking college courses online. It is the biggest challenge I have taken on since the TBI (traumatic brain injury).

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

I have an invisible disability, and some people think I am faking it and living off the system.

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

Yes. Changing my attitude about people and life in general has helped. One day, I decided I could sit and cry for the rest of my life about all that I have lost, or I could be happy with my new life and live it.

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

My home life has been affected, but in a positive way.

I take pride in myself and in my accomplishments. Relationship-wise, it’s been a curse.

I haven’t been able to find people who can deal with my issues because they just do not understand. I am thankful they don’t understand how life is for a TBI survivor because, if they did, it would mean they also suffered a TBI. (The only way anyone can truly understand what life is like for a survivor is to live it themselves.)

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

Yes. My social life has changed a lot. During the first year, I found out who my real friends are. Now I have a small circle of friends who I know I can trust. I go out dancing once a week with friends. I do this because I still can.

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

After living with my daughter for about a year, I am now on my own. I do everything myself – I am even back to driving. I will say this much: I thank God for my GPS! Ha, Ha! Yes, I understand what it is to be a caregiver, and it takes a special kind of patience for a caregiver of someone with a TBI.

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

I am working on a Communications degree and changing to Community Service and Social Work. My goal is to work with other survivors as a life-coach/advocate. I am getting better grades now than I ever did in high school. I can only handle two classes a semester, so it will take twice as long as normal to get my degree. But, I will see it through to the end.

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.

It didn’t take me as long as it does for some others, but learning to love your new self and accept your new life is, I believe, the secret to moving on. Love and acceptance of yourself is the base you can grow from.

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

I highly recommend that brain-injury survivors seek out other survivors. It was such an awesome feeling the first time I spoke to someone who “Gets it.” It was like someone turned my light back on. I felt free and almost normal again. I was no longer alone. I have a motto I live by. It was written from one of the first survivors I met – in a Yahoo health and wellness chatroom. I think he went by “Rhino.” Anyway, here it is. “Mourn what you lost. Use what you have. Anyone can quit.” My strongest advice to other survivors is “NEVER GIVE UP!”

 

If you would like to be a part of the SPEAK OUT! project, please go to TBI SPEAK OUT! Survivors Interview Questionnaire for a copy of the questions and the release form.

(Clip Art compliments of Bing.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

If you like my blog, share it with your friends. It’s easy! Click the “Share” buttons below.

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SPEAK OUT! . . . . . . . . . . . . . Itty-Bitty Giant Steps

SPEAK OUT! Itty-Bitty Giant Steps

presented by

Donna O’Donnell Figurski

Itty-Bitty GIant Steps for BlogSPEAK 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 neelyf@aol.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.

16358690_1201798153189065_1370881325_n

David Smith – Brain Injury Survivor

David Smith (survivor) … Today’s Itty-Bitty Giant Step is going to be to just get out of bed and to stay up.

bed

 

 

bonni-villarreal-1

Bonni Villarreal – Caregiver for Husband

Bonni Villarreal (caregiver) … My husband had a stroke in 2012, so he has an acquired brain injury (ABI). It has been a long, hard road as is most of what you post about. But, I do have wonderful news to report. After almost five years of having a G-Tube (gastrostomy a332i0_185tube), Mike is now able to drink fluids! (He’s been eating for a long time, but we didn’t think he would ever get back the ability to swallow liquids.) So, DON’T EVER GIVE UP! It’s almost five years later, and Mike is proving doctors wrong every day. He is going for a swallow test, so the tube can come out for good … best present ever!

YOU did it!

Congratulations to contributors!

(Clip Art compliments of Bing.)

(Photos compliments of contributors.)

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

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.

If you like my blog, share it intact with your friends. It’s easy! Click the “Share” buttons below.

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TBI Tales . . . . . . . . . . . . . . . . Twelve Years, But Who’s Counting?

Twelve Years, But Who’s Counting?

by

Donna O’Donnell Figurski

1242232191169820850212_white,_green_rounded_rectangle.svg.med.pngTwelve years! Twelve years ago today, I came as close as a breath to losing my husband and best friend, David. While exercising (a thing he did every day to stay in shape), David did thirteen chin-ups, one more than he had done every other day. That was the proverbial “straw that broke the camel’s back,” or in David’s case, the “chin-up that caused his subarachnoid hemorrhage.” That day, as I rode with him in the ambulance to the hospital, I never realized what lay ahead for us. I never dreamed that this blip would be life-altering. I thought we’d be home by the end of the day, carrying on with life as usual. I was wrong!

david-jareds-wedding-060513

David H. Figurski, Ph.D. – Brain Injury Survivor

David remained in the hospital in the Neuro-Intensive Care Unit (NICU) and the step-down unit at Columbia Presbyterian Hospital (now New York Presbyterian Hospital) for three weeks. While he was there, he was treated to two more brain surgeries – one for an aneurysm and the other for an arterial venous malformation (AVM). He then became a guest at a local rehab hospital for another two months, until insurance wrongly said he was fine to go home.th-1

I am grateful that David is still with me. He wasn’t expected to be. Each surgeon gave me little hope that he would survive any of his surgeries. I’m glad that David proved them all wrong. I’m glad that we have had twelve more years together, and I hope to spend many more with this man whom I have loved since I was sixteen years old.

animated-book

Hopefully, in the sometime future, you will be able to read David’s whole story in my book-in-manuscript, titled “Prisoners Without Bars: A Caregiver’s Tale.”

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

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