TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘TBI Survivor’

Caregivers SPEAK OUT! Tatiana Puckett

Caregivers SPEAK OUT! – Tatiana Puckett

presented

by

Donna O’Donnell Figurski

Puckett, Tatiana Caregiver 1 0713151. What is your name? (last name optional)

Tatiana Puckett

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

Palmdale, California, USA     tatianamdiaz@yahoo.com

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?

The traumatic brain injury (TBI) survivor is my spouse (Joshua). He was 31. Josh was assaulted late at night outside our apartment building.

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?

I began care on April 10, 2013, the day Josh left the hospital. I have always been his main caregiver. I was 30.Puckett, Tatiana & Josh 071315

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

I was caring for my two sons, and I was pregnant with the third.

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

I was employed but gradually had to go from full-time to part-time, which got me laid off from that position. My mother-in-law moved in with us, which allowed me to continue working and accept a new job.

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

My mother-in-law takes care of the boys almost around the clock since the date of the injury to now.

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

I began care as soon as Josh got home from the hospital.

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

No. Josh wasn’t in a coma, but he was given a lot of sedatives. Josh is very rebellious and antsy. You can’t tell him to sit still because, even prior to his TBI, he wouldn’t. Josh constantly tried to flee the hospital and the rehab center. I even had to go to the hospital one night in the middle of the night to convince him to stay. I drove between home and the hospital a lot, especially since the hospital didn’t allow children under 12 to visit. My mother-in-law and I had to take turns.

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?

Yes, Josh had inpatient rehab – occupational, speech, and physical therapies. It should have been a lot longer, but Josh managed to talk his way out of it in two days time. When Josh had rehab, I was right there with him.

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

I try to keep Josh calm, which can be difficult. It changes daily and can get really frustrating, but I do my best to keep aggression at bay.

Puckett, Tatiana & Josh 2 07131512. How has your life changed since you became a caregiver? Is it better? Is it worse?

It’s difficult. I feel guilty because I feel torn between work, the kids, and Josh. Josh requires a lot of my time. I feel like my kids are missing out on time with me because, when I’m not at work, I’m with Josh. And, sometimes when Josh needs me, I can’t help him because I need to spend time with my boys.

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

I miss being able to depend on my husband for everyday things. I have to parent with my mother-in-law instead of with my husband, which isn’t bad, but it’s not ideal. Josh can’t be around the kids too long because they overwhelm him. It’s hard.

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

I like watching Josh discover new aspects of his creativity. He has a newfound excitement for writing and painting, both of which have bloomed since his TBI.

15. What do you like least about brain injury?

I find Josh’s new personality to be overwhelming at times. He wants to share every poem, every drawing, and every thought with me, even when I just want a quiet moment.

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

Time. As time goes on, it gets easier, but some days are still really hard.

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

Like I mentioned above for question 12, I feel stretched in every direction. I did before as a working mom, but even more so now. I feel like, in a day, I end up with maybe two minutes to myself, but, once I get those minutes of silence, Josh needs me to listen to a song, a poem, etc. I’m happy for him, but, between work, handling home finances, kids, and him, it’s so tiring.

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

A little. I mean, maybe Josh and I go out a bit more. With his mom home, we get to go to open mics, so Josh can play music and read his poetry.

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

I’d like to say that we will own a home in ten years. We all need space, so this two-bedroom apartment isn’t cutting it.

Puckett, Tatiana Caregiver 2 07131520. What advice would you offer other caregivers of brain-injury survivors? Do you have any other comments that you would like to add? 

Give yourself and your TBIer some space. Don’t let your emotions get the best of you. If you feel an argument starting, stay calm and, as calmly as possible, explain that you should both step away before emotions escalate out of control. Remember not to take things personally. It’s not you your survivor’s mad at. It’s a frustrating world, and it’s scary, and your survivor’s lashing out. Just keep calm and step away.

 

Disclaimer: Any views and opinions of the Contributor are purely his/her own.

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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TBI Tales . . . A Letter to Attackers Jasmine Oldham

To My Husband’s Attackers – One Year Later

by

Jasmine Oldham

presented by

Donna O’Donnell Figurski

Oldham, Jasmine Caregiver 071115You’ve been on my mind lately. Frankly, you’ve been on my mind most of this year. Do you realize today marks a year since you attacked my husband while he was walking in Toronto? Doesn’t it seem odd that your actions almost ended my husband’s life, and you haven’t even seen it?

I wonder about you. I can’t help it. When we’re in the city for appointments (don’t you know that all the brain-injury specialists are in the same city in which this happened), I watch the eyes of the men we meet. I wait to see if they recognize my husband – if they are seeing the ghost of the man whom they thought they murdered a year ago. I don’t know that I’ll ever stop being curious or watching for you. It just makes sense that we will meet; the police assigned to this case are kind and smart, and the world isn’t as big as you might think it is.

My husband and his friends were out for his bachelor party. I know they told you. I know you knew I was waiting at home for the love of my life. And yet, my husband and his friends barely talk now. Traumatic brain injuries have a way of breaking up friendships. Our first year of marriage was spent in doctors’ offices and rehab clinics, instead of having vacations and adventures.Oldham, Jasmine 071115

I wonder at your group dynamics now, and I am curious if they parallel ours. Have you pushed each other away because you can’t stand seeing your friends as the monsters from that night? Or, do you hold each other close – keeping tabs on each other to make sure the secret stays secret? Which of you will be the next with a boot to the head for saying the wrong thing? And that girl. Does she worry each time you all go out that you’ll be arrested? Or beaten? I wonder if she struggles with panic attacks each time a phone rings? I did. For months, I relived the voicemails detailing your attack on my husband.

When we meet, I hope you tell me you’ve counted the days. I hope that night changed each of your lives and convinced you to spend every day paying penance for the life you hurt. I hope the aftermath – living with that secret – haOldham, Jasmine 2 071115s propelled you from the boys you were a year ago to men. I hope you’ve done something stunning with your life.

Of course, I hope you approach the police and confess. I’m not going to lie and say that’s not a wish. But, even on my most optimistic days, I can’t see any of you being strong enough to step up and accept the consequences. Nor, can I imagine any of you with enough compassion to want to put us at ease and offer us closure. (If you want to prove me wrong, by all means contact the police at the 52nd Division – http://www.torontopolice.on.ca/d52/).

At the very least, let this monumental, awful thing that rocked our world rock yours too. Don’t be so callous and immature not to realize the gravity of what happened that night. You stole the life we were planning on. Oldham, Jasmine 3 071115Let that change you. Become better. Make it up to the world. Instead of letting your actions of that night define you, choose to make it the catalyst for a good life. I hope one day you can look back and say that that night you realized how powerful you were and you chose to invest your life in helping others instead. And, I hope when we meet, you can tell us that we’ve been on your mind too.

(Disclaimer: The views or opinions in this post are solely that of the author.)

If you have a story to share and would like to be a part of the SPEAK OUT! project, please submit your TBI Tale to me at neelyf@aol.com. I will publish as many stories as I can.

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SPEAK OUT! Faces of Brain Injury “Maria King”

 SPEAK OUT! Faces of Brain Injury – Maria King

presented by

Donna O’Donnell Figurski

 Brain Injury is NOT Discriminating!

facesOn a beautiful day, I went on a bike ride with some friends near San Francisco. The plan was to climb Mt. Tamalpais and even ride to gems like the Alpine Dam.

I loved cycling, but it wasn’t my life. I was a recent college graduate devoted and dedicated to working as a teacher in my hometown. I planned on going home to finish lesson-planning and grading after my morning bike ride. graphics-cycling-473021

I didn’t expect to crash while descending to the Alpine Dam – lacerating my kidney, getting a brain hematoma, and breaking my wrist. The crash also resulted in severe brain trauma – something that I and many of my friends don’t have enough awareness of. I don’t remember anything at all injury-clipart-kid-head-injury-sketch18385136from the downhill section that changed my life to most things that occurred to me and around me the following month. My senses of time, identity, personality, values, education, and motivation all temporarily left. The doctors in the ICU (intensive care unit) weren’t sure if I’d survive. All I can remember from the experience is being alive, but not feeling like myself.

When I finally went home from the hospital, I had a natural high from rediscovering life and surviving, despite all the “what ifs.” As I began to feel more like myself, I started feeling angry, disappointed, and guilty in regards to myself and the accident. It isn’t easy living with all these uncertainties, since I somewhat had a “plan” for my life. But, I survived, and I’m going to continue fighting the good fight.

Disclaimer: Any views and opinions of the Contributor are purely his/her own.

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

If you don’t like my blog, “Share” it with your enemies. I don’t care!

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“Another Fork in the Road” . . . Brain Injury Radio Network . . . Panel Discussion – “All Disabilities Are Not Visible”

YOU ARE INVITED!

Panel Discussion – “All Disabilities Are Not Visible”

Panel Members – Catherine (Cat) Brubaker, Julie Kintz, and Juliet Madsen

with host Donna O’Donnell Figurski

putthis_on_calendar_clip_art

Catherine (Cat) Brubaker, Julie Kintz, and Juliet Madsen join host Donna O’Donnell Figurski to discuss the many problems that surround their lives as brain injury survivors who look “normal.”

People easily understand the implications arising when someone suffers a broken limb or is diagnosed with cancer or is physically disabled. But, when someone is living with an “invisible” brain injury, folks find it difficult to comprehend. They don’t understand the seriousness of memory loss, confusion, lack of organizational skills, bursts of anger, or lack of emotions. “Get over it!” “That happens to me too,” and “Oh, I know what you mean….” are some of the phrases that are commonly heard by brain injury survivors, and they’re infuriating. Such a phrase is a big, red flag that shouts that the friend, family member, or loved one simply does not understand what his or her survivor is going through. Cat, Julie, and Juliet will address this topic. They hope to help others understand more clearly what it means to live with a brain injury while looking “normal.”

Cat Brubaker Survivor  Panel 070515Cat Brubaker is a two-time traumatic brain injury survivor and the founder of “Hope For Trauma.” Also, in the summer of 2014, Cat rode her recumbent trike Across America (diagonally) to raise awareness for brain injury.

Julie Kintz Survivor Panel 070515When Julie Kintz‘s car went off a cliff in California in 1991, she got a brain injury. Julie is a former Brain Injury Radio Network host.

Juliet Madsen UniformTroop, Juliet Madsen, got her brain injury while serving her country in Iraq. Juliet is a member of the Board of Directors of R4 Alliance and is a master quilter. You can see some of her work at “Stroke of Luck Quilting.”

Come One! Come ALL! 

What:        Panel Discussion Topic – “All Disabilities Are Not Visible”

Why:        Cat, Julie, and Juliet will discuss how “Invisible” brain injury affects their lives.

Where:     Brain Injury Radio Network

When:       Sunday, July 5th, 2015

Time:         5:30p PT (6:30p MT, 7:30p CT, and 8:30p ET) 80 minute show

How:         Click: Brain Injury Radio Network

Call In:    424-243-9540

Call In:     855-473-3711 toll free in USA

Call In:    202-559-7907 free outside USA

or SKYPE

If you miss the show, but would like to still hear the interview, you can access the archive on On Demand listening. The archived show will be available after the show both on the Brain Injury Radio Network site and on my blog in “On the Air.”

(Clip Art compliments of Bing.)

(Photos compliments of panelists.)

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.

Here are this week’s Itty-Bitty GIANT Steps

Runners+-+Cartoon+4Jeffrey Smallwood (survivor)…This month is Brain Injury Awareness Month in Canada. Last weekend, I ran my first 5K run. marathon_race_male_runner_5k_bumper_sticker-r9dbbd0f42d254ebb8b5c309ad75f5967_v9wht_8byvr_324I did it for brain injury awareness. My local organization raised over twelve thousand dollars, which will continue to fund our clubhouse. My running is not pretty, as I’m a fat guy. I still felt the burn two days later. This was big for me, as I’ve done something I’ve never done before. A shout-out to all my fellow Canadian brain injury survivors!

Dave Villarreal SurvivorDave Villarreal (survivor)…Dave Villarreal joined the competition at the National Veterans Wheelchair Games at the Kay Bailey Hutchison Convention Center in Dallas, Texas. 11252643_481277165373324_6491726304375694714_nIn this week-long event (June 21–26), Dave took part in many events, including shot put, javelin, handcycling, archery, and rifle shooting.

He is the proud recipient of two medals. He won a silver medal in shooting and a gold medal in archery!

And, he came in the top five for handcycling! Dave Villarreal Survivor 2He says, “That was my best race yet. What an awesome rush!” Dave’s advice: “Get out and LIVE your life. Have fun.”

YOU did it!

Congratulations to all contributors!

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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

If you don’t like my blog, “Share” it with your enemies. I don’t care!

Feel free to “Like” my post.

Caregivers SPEAK OUT! . . . . . Kendra Brittain

Caregivers SPEAK OUT! – Kendra Brittain

presented

by

Donna O’Donnell Figurski

Kendra Brittain 2 Survivor 0423151. What is your name? (last name optional)

Kendra Brittain

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

Sapulpa, Oklahoma, USA     brittainhome@yahoo.com

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?

My TBI (traumatic brain injury) survivor is my son. He was about 13 when his injury happened. He was playing football and got hit on both sides of his helmet. This caused a severe concussion. No one knew what was going on at that time. Of course, both the coach and we let him keep playing any sport out of not knowing what happened to him. As a result, his injury did not have time to heal.

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?

I immediately took him to a seizure-doctor because I suspected his juvenile epilepsy had come back. But, it was very different. Nothing showed up on what was wrong with him until six months later. My son’s concussion was around 2008. I was 37 when his injury occurred. My son is now 18, and he is mostly unable to take care of himself.

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

My husband and I were taking care of our daughter in addition to our son.

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

No, I wasn’t working. I had been injured at work, which left me disabled. So, I wouldn’t have been able to work anyway. But, I was able to care for my son better.

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

My husband helped me a lot when he could. Other than that, I didn’t have any help.

8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?Brittain, Tyler Survivor 2 042315

My husband and I helped our son immediately by taking him to the doctor.

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

No, my son wasn’t in a coma, but he lost all memory of before the accident and the week of the injury. He can’t remember his childhood at all.

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?

My son did have to do a lot of physical therapy for his back because he developed a syrinx due to the injury. (A syrinx results when cerebrospinal fluid, which normally flows around the spinal cord and brain and transports nutrients and waste products, collects in a small area of the spinal cord and forms a pseudocyst.)

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

My son needs constant reminders to do stuff because his memory isn’t very long. He requires reminders to take his medicine. Because his depression was so great, we had to give it to him.

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

My son’s brain injury has made life better because we are closer as a family, and it made us realize what is important in life.

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

My son loved sports, and we loved to watch him play. But, because of his memory, no one will give him a chance – not even to play basketball, which he is good at and enjoys. He really misses playing too, so he has had to find enjoyment someplace else.

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

I enjoy our family life and the closeness we have as a family. I would not change it for the world.

15. What do you like least about brain injury?

I dislike all the struggles my son has to go through and the limitations he has that no one can see by looking at him. I also dislike when he has a seizure and I can’t do anything about it.

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

I’ve been helped by my faith in God’s wisdom and knowing He can heal anyone.

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

We are a closer family than ever before.

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

No, not really.

Brittain, Tyler Survivor 04231519. What are your plans? What do you expect/hope to be doing ten years from now?

My son got his driver’s license. He’s graduating high school and then heading to college to learn about computers. He will have a job that he went to school for – doing what he wants to do.

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

Don’t give up – even though your circumstances may look dim. There is hope in life and in God. There is a better plan for your life in the future. God will make something good out of something bad. Also, if you know your child or your survivor and you know that something is not right and you feel that what the doctors say doesn’t make sense, get a second opinion and pursue it. We did that, and my son is ten times better.

 

Disclaimer: Any views and opinions of the Contributor are purely his/her own.

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

If you don’t like my blog, “Share” it with your enemies. I don’t care!

Feel free to “Like” my post.

TBI Tales . . . . . . . . . . . . . . . . . Interview with Ann Boriskie – Teach Believe Inspire Award recipient

Interview with Ann Boriskie – Teach Believe Inspire Award recipient

by

Stephen Smith

(presented by Donna O’Donnell Figurski)

Ann Boriskie 1 Survivor 062915A traumatic brain injury survivor, wife and mother of three, Ann Boriskie has redefined each of these roles as she progressed physically and spiritually since her car accident. Along the way she also founded the Brain Injury Peer Visitor Association, which offers hope, support and education to brain injury survivors and their families.

Ann’s commitment to helping brain injury survivors has garnered her the Christopher & Dana Reeve Foundation Quality of Life Grant in 2013 and again this year in 2015. The Brain Injury Law Center is honored to recognize such a champion for traumatic brain injury survivors.

Ann, Teach Believe Inspire Award recipient, recently took the time to answer some questions from the Brain Injury Law Center.

Q: It wasn’t until a year after your auto accident that you found out you had sustained a traumatic brain injury. Had you suspected that your brain had been injured, or was it a shock to hear that was the case?

A: I had no idea that I had a brain injury. Not one doctor had said anything at all about my brain. I was told by one neurologist that I had “post-concussive syndrome.” That doctor acted like it would go away — go home and lead your life. He really never explained that my brain may be affected.

I truly thought that the wreck made me crazy. That’s why I had changed and could no longer do so many things that I could do previously.

Q: As you recovered from your accident, did you have physical and mental goals that motivated you through your rehabilitation?

A: I really did not think of my life after the car wreck in terms of goals, since I didn’t realize I had a problem. I knew I had multiple parts of my body that were injured and that hurt — and that I had to go see numerous doctors. I knew all of the “things” I could no longer do — but did not understand that these were linked to an injury to my brain.

I was a mother of three children (youngest fifth grade; oldest in the eleventh grade). I really had no choice but to try to continue my “normal” life. I was happily married. So my goals were to continue taking care of my husband and three children — cooking, cleaning, doing errands, grocery shopping, etc. (Of course, I had to modify how I now accomplished all of this.)

Physical: I have worked out since my early twenties. Thus I continued to do my weight lifting and treadmill walking as I had previously. I didn’t really know what I should or should not be doing. My current doctors tell me that had I not continued all of my workouts, I might be in a wheelchair today. I pushed through my pain and continued to keep my body’s core strong, even though my neck and back were both injured.

Q: How did counseling help your healing process? What kinds of people helped you?Ann Boriskie Survivor 4 Award 0629151394302_10202076860104199_1450531656_n

A: Doctors truly gave me my life back — both physically and mentally.

My psychiatrist (a doctor of physical medicine and rehabilitation) was the one to determine physically what problems that I had and how they all were interrelated (since I had 10 parts of my body injured in my car wreck). She tailored my medicine to help me live as normal of a life as possible.

I found several neuropsychiatrists who helped me better understand the different facets of brain injury, and helped teach me “compensatory strategies” to live my life somewhat normal.

The neuropsychiatrist and counselors explained that so many of my symptoms and changed behaviors were absolutely common with an injury to the brain.

It was so much better for me to realize that I had a brain injury — instead of labeling myself “crazy.”

I joined support groups where I could converse with others in my situation, again helping me understand that my symptoms were just like theirs — and normal for an injury to the brain.

Q: How did the accident change how you identify yourself as a person and as a mother and wife?

A: Previously I was extremely driven in my work and competitive. The job often came before my family. The person I was, was defined a lot by my work.

After my car wreck I couldn’t work — I tried numerous times. Thus I had to figure out who this “new me” was. I struggled with this for years. It took me wholly accepting the “new me” and my realization that I was still a very valuable person in life to become the helping person that I am today.

As a mother and wife, I became much more accessible to my family and their own problems and needs. I put them first. They taught me my value with each of them.

The master plan for my life was to give up a big chunk of who I was as a person to raise two doctors (a neonatologist and an internal medicine hospitalist) and one RN nurse. Because of my own struggles, my 3 children are devoting their own lives to help others.

What advice do you have for TBI survivors who become depressed about their new life?

  • “Push the envelope” — remember I CAN — don’t ever let others tell you all you can’t or should not do.
  • Identify all of the things that you now have and can do — do not focus on what you can’t do.
  • Help others. By helping others you will help yourself, and see yourself having self worth.

Ann Boriskie Group Survivor 062915Q: You founded the Brain Injury Peer Visitor Association. How did you realize the importance of visiting people who have suffered TBI?

A: My association does not just help TBI survivors. They also help all non-traumatic brain injury survivors (such as stroke, aneurysm, tumors, abscesses, bleeds, AVM, cancer, etc.). It’s so important for the world to understand that all of these causes make up a brain injury — and all are not TBIs.

I initially heard about the American Stroke Association’s Peer Visitor Program, which has been in existence for over 40 years. They only serve stroke patients in the inpatient rehab units of hospitals.

I thought that if the American Stroke Association was successfully helping stroke patients that I could help traumatic brain injury survivors as well as ALL of the non-traumatic brain injuries which exist, not just stroke.

I loved the idea of helping other people like myself. I had no one there to help me — I had no information on what a brain injury even means — I felt so very alone, isolated.

I also saw the need to talk to the patient and/or family from the very beginning of the brain injury event — to give them information immediately to help them understand.

Thus my program begins in the ICU unit and step-down units, the inpatient rehab units, then the day or outpatient program of the hospital. A person’s journey through their brain injury changes the questions they have and the type of information that they need.

Q: It’s easy to see that a person who has suffered a TBI needs help, therapy and education. How important is it to talk to the families and caregivers of the survivor?

A: Extremely important: “Knowledge is Power.” The more a survivor understands about their own brain injury, the easier time they will have of accepting the injury. When the family reads about and understands why their loved one has changed and why they are different, why they are exhibiting a large range of behaviors — then the family can better help and deal with their loved one.

With acceptance that they did indeed injure their brain, which changed their brain and changed the person they were, a survivor along with the family can move forward and actually work toward improvement.Ann Boriskie Survivor 2 062915

Without this knowledge, the survivor often hates himself/herself. The survivor will become suicidal, more emotional, reclusive, and not wanting to get better. The family without an understanding and acceptance often shuns their own loved one, often leaving them or deserting them emotionally or physically.

That is why my Brain Injury Peer Visitor Association’s program hands out a variety of packets of information full of book lists, website lists, resources, CDC information, newspaper and magazine articles, survivor and caregiver stories, etc.

Q: If someone wants to volunteer with the Brain Injury Peer Visitor Association, do they need to have first-hand experience with TBI?

A: To be a Brain Injury Peer Visitor they have to be a survivor of a stroke or some form of brain injury, or the caregiver of a brain injured survivor. (Otherwise a person cannot relate in a personal way — as a person “who has been there and done that.”)

thQ: What did it mean to the Brain Injury Peer Visitor Association to receive the Quality of Life grant from the Christopher & Dana Reeve Foundation both in 2013 and again this year?

A: It is a huge honor to receive the Quality of Life grants. I so respect all that Christopher Reeve and his wife Dana did to help others during their life-time. They represented the true selfless love and help that I so respect and hope to emulate.

Reading Christopher Reeve’s two books inspired me to get better and to actually do something with my life. I thought that if a man in a wheelchair who can do so little could help so many other disabled individuals, then I could get better and help brain injured survivors.

Reeve became the face of those that are disabled. He taught that a disability can be the beginning of your life — not the end.

The grants also assured the printing of the information then the continuation of providing a Packet of Information to every brain injured and often paralyzed survivor and their caregiver who are Peer Visited by the Brain Injury Peer Visitor Association.

Q: What goals do you have for the Brain Injury Peer Visitor Association going forward?

A:

  • To continue to serve all of the hospitals and their various units and all of the rehabilitation facilities where we currently have our Brain Injury Peer Visitor Program.
  • To continue to grow the program by establishing our program at more new hospitals and facilities.
  • To train more new volunteer survivors and/or caregivers in order to serve more individuals.
  • To help educate as many brain injury survivors and their families and loved ones.
  • To educate the public across the United States and throughout the world about all forms of brain injury through our website at braininjurypeervisitor.org.
  • To create a true understanding of what the word “brain injury” means — to make it a household word that is understood and accepted.
  • To help create a tolerance and loving understanding for a person with a brain injury.
  • To help develop a least one Brain Injury Peer Visitor Program in every state.

This interview by Stephen Smith was posted in Teach Believe Inspire Award on June 2, 2015. Stephen founded the Brain Injury Law Center to help brain injured victims, survivors and their families.

Ann Boriskie Survivor 3 062915To learn more about Ann Boriskie and her work with brain injury, please visit the following sites.

Video of Ann Boriskie and the Brain Injury Peer Visitor Association

Ann Boriskie’s blog – The Brain Fairy

The Brain Injury Peer Visitor Association

The Brain Injury Law Association

(Disclaimer: The views or opinions in this post are solely that of the author.)

If you have a story to share and would like to be a part of the SPEAK OUT! project, please submit your TBI Tale to me at neelyf@aol.com. I will publish as many stories as I can.

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Please leave a comment by clicking the blue words “Leave a Comment” below this post.anim0014-1_e0-1

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(Clip Art compliments of Bing.)

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.

Here are this week’s Itty-Bitty GIANT Steps

Gill Evans (caregiver)…Hubby informed me this afternoon that his world is a better place mitzvah-clipart-teapot-clip-art-free-retro-cup-o-tea-valentine-clip-art-old-design-shop-blogfor my being in it. And then, he offered to make me a cup of peppermint tea. Bonus! Unfortunately, he got distracted, and I got black coffee with a peppermint tea bag in it. Ah, well! It’s good that we can laugh, isn’t it?

Don't Ever Give Up 3Lee Staniland (survivor)…Man, oh man! I have been going around and around with Time Warner. The bill was way high, so I called and got it down a lot. Then, when I went to pay the bill, it wasn’t in the system yet. I was told to wait a few days. I did, and the bill still wasn’t in there. So, I bitched and bitched and went through at least three people. I finally got it down some, and I thought it was over. Well, they just called me. The bill was even lower, and I have all kinds of the stations, like HBO and all the good ones. IT PAYS NOT TO GIVE UP!

Linda Wells (survivor)…Exciting news! I will receive this year’s Survivor Honoree Award from the Brain Injury Center (BIC) of Ventura County. This means a lot to me. 1 Linda Wells 10847281_10203718509225374_5703501535919960786_oMy dear late husband, Rex, and I are two of the founders of the BIC. gold-award-ribbon-clipart-RIBBON_AWARDIt started in a living room with six other people. Rex looked and looked for a place for all of us to fit in. That is how it happened to go from a living room to now – “An Evening of Magical Memories.” I am honored that I have been chosen this year. I intend to continue to educate all. Thank you, BIC!

YOU did it!

Congratulations to all contributors!

(Clip Art compliments of Bing.

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

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Feel free to “Like” my post.

On The Air: Brain Injury Radio “Another Fork in the Road” Interview with TBI Survivor & Cross-Country Cyclist, Daniel Mollino

On The Air: Brain Injury Radio “Another Fork in the Road”

Interview with TBI Survivor & Cross-Country Cyclist, Daniel Mollino

presented

by

Donna O’Donnell Figurski

images-1Daniel talks about how he was working at the top of a telephone pole for a cable company in northern New Jersey when he fell more that 25 feet causing his brain injury. 11427224_10153095515624215_7323889775533761154_nHe shared some of his adventures of his journey from New Jersey to California and his goals for raising awareness for TBI Survivors everywhere.

If you missed his interview on “Another Fork in the Road” on June 21st, you are in luck. You can listen to the archived show here. Click the link below to listen to Daniel Mollino and me.18 Daniel Mollino 060615 copy

See you “On the Air!”

On the Air: Brain Injury Radio – “Another Fork in the Road”

Daniel Mollino, Survivor Cycles Coast to Coast

Click here for a list of all “Another Fork in the Road” shows on the Brain Injury Radio Network.

Survivors SPEAK OUT! Michael Lee Savage

Survivors  SPEAK OUT!  Michael Lee Savage

presented by

Donna O’Donnell Figurski

Michael Lee Savage Survivor 0623141. What is your name? (last name optional)

Michael Lee Savage

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

Spokane, Washington, USA

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

I was 43.

4. How did your brain injury occur?

It started with double vision on February 26, 2003. I went to Urgent Care, and they immediately took me for an MRI (magnetic resonance imaging) scan, which showed a bleed in my brainstem called a cavernous hemangioma (a type of blood vessel malformation, where a collection of dilated blood vessels form a tumor). They sent me home to watch it. It bled three short weeks later. They wanted to operate, as the bleed had presented itself outwardly. My neurologist said I could wait. It didn’t bleed again until January 25, 2009, almost six years later. I was sent to Seattle, Washington, to have the surgery.

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

The morning I went to Urgent Care.

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

I had a CT (computed tomography) scan and an MRI scan.

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

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)?

I was in the ICU (intensive care unit) for twenty-one days and in an acute care center for another four weeks. I then had inpatient rehab for three weeks.

How long were you in rehab?

Three weeks

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

I couldn’t walk, talk, see, or swallow for over four months. Nystagmus (rapid involuntary movements of the eyes) and secondary dystonia (a disorder characterized by involuntary muscle contractions) came on while I was in rehab.

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

My brain injury took away all of my independence, like driving and walking unassisted. I have a feeding tube. My speech is slurred. The right side of my face droops, and my entire left side below the neck is numb.

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

Both independence and friendship have run away.

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

I have regained my joy of cycling.Michael Lee Savage Survivor 062315

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

I dislike not being able to see or to walk without loosing my balance. Lockjaw prohibits me from eating my favorite foods. Also, my voice is gone.

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

Physical therapists and riding my bike with my “guide-bride,” Patty, have helped me. They constantly stay on me to improve my quality of life, and they challenge me when I want to quit.

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

Yes. I am not able to contribute to daily rituals. Most of my relationships have suffered, including my romantic relationship with my wife.

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

Yes. It is hard to eat with others. Most of my friends can’t deal with my appearance and my stressed voice.

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

My wife is my main caregiver. Yes, I do understand how difficult it is, and it is very hard, considering our age and how much I still can’t do without her.

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

I hope to enjoy life more than I am now. I hope to be living life as normally as I can.

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.

Keep fighting to move – do the exercises, no matter how silly they may seem. They all have a purpose, and there are some that I wish I would have done and stuck with.

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

Never quit moving. Never give up hope. I immediately got a trike so I could feel human again. And now, six years later, I’m walking around town with a cane. I’m walking on flat surfaces without any cane. Fight for your independence. It’ll be the biggest battle you’ve ever faced, but eventually you’ll inspire others. They will say, “If you can do it, I can too.”

Thank you, Lee, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.

(Disclaimer: The views or opinions in this post are solely that of the interviewee.)

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

(Photos compliments of Michael Lee Savage.)

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.

If you don’t like my blog, “Share” it with your enemies. I don’t care!

Feel free to “Like” my post.

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