TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘physical therapy’

SPEAK OUT! . . . . . . . . . . . . . . . Faces of Brain Injury . . . . . . . . . . James Thomas (survivor)

SPEAK OUT! Faces of Brain Injury James Thomas  (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.

Thomas, James survivor 111115James Thomas  (survivor)…I’m a traumatic-brain-injury (TBI) success story. I had three brain surgeries to remove three blood clots in my head. After the third surgery, I fell into a coma for three days. When I woke up, I lost the ability to walk and talk, and I wasn’t able to take care of myself. I had to learn every life-skill again, including how to write. I had to wear a diaper for seven months.

I was in the hospital for a month. When I was released, I went to one of best rehab centers in the state of New Jersey. There I had occupational, physical, and speech therapies twice a week. I was able to go home after three months, and my ex-girlfriend nursed me back to good health. I improved 150% in two years. I work now as a teacher assistant with Special Needs students.

 

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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Survivors SPEAK OUT! Jen Swartz

Survivors SPEAK OUT! Jen Swartz

presented

by

Donna O’Donnell Figurski

 

 

jen swartz Survivor1. What is your name? (last name optional)

Jen Swartz

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

Castleton, New York, USA     Passionate4Christ29@yahoo.com

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

My brain injury happened on June 8, 2000. I was 18.

4. How did your brain injury occur?

I was in a car accident. I was following a close friend to her boyfriend’s house. My car was T-boned by another car going 55-60 mph. My small car, a 1987 Toyota Corolla, was thrown across the street. Jen (the person I was following) said that my body was hanging out the door. She thought I was dead because there was blood coming out of my mouth. (To top it off, I also have congenital scoliosis and had to have a major operation when I was nine years old – a bone fusion in my neck to prevent the curve from progressing further. I had to wear a halo to restrict neck movement so the bone fusion could heal.)

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

I think it was probably when I was in a coma that people realized that I would have some cognitive problems.

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

I required a tracheotomy and a food tube. Also, my head was shaved for a reason. At the beginning, my brain was swelling, but, praise the Lord, the swelling went down. So, it was not necessary to take a piece of my skull off to allow room for the swelling.

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

Yes. I was in a coma for six weeks.

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 did inpatient rehabilitation at Sunnyview Rehabilitation Hospital. This included speech, occupational, physical, and recreational therapies.

How long were you in rehab?Jen Swartz Survivor

I was in rehabilitation for seven months.

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

I have memory issues for certain! I have problems with concentration, focusing, emotions, and balance.

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

My life is MUCH better! I don’t remember eighteen years of my life, but from what I am told, I was very unhappy. Now I have God. He is my purpose! I am also blessed to say that I am engaged to an incredible man, who has an acquired brain injury (ABI). It is so great! We have known each other for three years, and we see eye-to-eye on practically everything.

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

Absolutely nothing!

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

I like that I don’t take anything for granted and that I am content with the way things are. God blessed me with a second chance at living, so I am trying to make the most out of everything in life.

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

I dislike the anxiety issues, the memory problems (which seem to happen quite frequently), and the migraines.

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

Yes! I was helped by Living Resources, where I participated in a group for people with traumatic brain injuries (TBIs). I was also helped by the Cognitive Group, which consisted of survivors working on different goals/strategies for different areas of life. The belief is that each individual can improve his or her life after a TBI. The group is run by neuropsychologists and counselors.

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

Yes. My mother and sister are very distant mentally from me, since they don’t seem to have the desire to want to accept the change that this injury made. I feel it may be caused by a little pride with them, considering the fact that I believe that I was quite an intelligent woman before my injury. Before my accident, I was accepted into Ithaca College, since I wanted to delve into the medical field in some way. My mother and sister do not work well with the cognitive change in me that the injury has caused, such as my not desiring to be with large groups of people or my forgetting things.

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

I believe my life has changed immensely. I used to have many, many friends and loved to be in large groups of people. Now, however, I don’t enjoy being in large crowds or in large groups of people. I get overwhelmed. I enjoy spending much more alone-time now, as well. I have even been taught how to crochet. I love doing crochet, especially when the winter months roll in.

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

I haven’t needed a caregiver, but I understand what it takes to be a caregiver, since I have had staff work with me on and off throughout the years.

Jen Swartz 218. What are your plans? What do you expect/hope to be doing ten years from now?

My future plans consist of buying a home with my fiancé through the Section 8 program. My fiancé will be my husband on May 27, 2017. I plan to continue working with Living Resources in the years to come, and my fiancé does as well.

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.

My helpful hint is to be patient. Remember: Slow and steady wins the race! Slow progress is key to amazing growth. Also, be open-minded to hearing from staff-members assisting to help you. If you listen to any suggestions, which may guide you to improve, you are being very wise in opening up your mind for possible progress.

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

Keep at it! Don’t give up! Also, you will grow if you listen to what “staff” suggest you do in order to improve! You can and will do it!
(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.

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

 

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Survivors SPEAK OUT! Hayley Nichols

Survivors  SPEAK OUT!  Hayley Nichols

presented by

Donna O’Donnell Figurski

Hayley Nichols Survivor 0727151. What is your name? (last name optional)

Hayley Nichols

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

I live in Valparaiso, Indiana, USA. My accident occurred in Lafayette, Indiana.

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

I had a traumatic brain injury (TBI) on November 16, 2014. I am 23 years old.

4. How did your brain injury occur?

Some background: I went home to Lafayette, Indiana, for my brother’s birthday dinner with my family on November 16. My brother does motocross as a hobby, and I had never been on a dirt bike before. So, that day I went for my first ride. We made it down the road, and then we wrecked. An eyewitness of our accident said that we were not speeding at all, but the bike started to teeter back and forth. My brother was able to dodge a mailbox. The bike then hit a drainpipe head in a ditch. The eyewitness said that the force propelled my brother and me ten to fifteen feet into the air. We were so high that we were in the tree branches before we landed on the ground.

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

As a result of our possible head traumas, my brother and I were rushed to two different hospitals. My mom told me that it was horrible to have us separated but that one hospital wouldn’t be able to handle us if we both needed emergency surgery for head trauma.

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

I did not have any emergency surgery the day of the accident. I did have surgery to repair my nose. I hit my face so hard that my nose was completely flattened.

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

I was not in a coma, but my mom told me I could only respond by moaning whenever a doctor or nurse performed a sternum rub. My mom told me that, after a few days went by, I was able to wiggle my toes and fingers. I was in the Intensive Care Unit for almost a 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)? How long were you in rehab?

I did rehab as an inpatient for about four weeks. I had occupational, physical, and speech therapies Monday through Friday. Once released from rehab, I had to continue therapy as an outpatient.

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

When we had our accident, I landed on the left side of my body, so my left knee is always painful. I am able to walk on my own, and I am even driving. But, I only drive down the road – I haven’t been on the interstate yet. When I was first released from rehab, I had trouble with depth perception. I still have trouble with balance. One of the biggest problems that have resulted from my TBI would be dealing with personality changes. (I become upset easily. I could be crying my eyes out over something someone said to me, then five minutes later, be completely happy.)

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

My life has changed tremendously. A good thing that has resulted from the accident is that my family is much closer. The worst thing that has happened to me is that my entire memory of my life has been erased. I am now able to remember things if someone triggers the memory by a song or by giving pieces of the event. It is honestly scary not to recognize people whom I have known my whole life and who have known me. It is frustrating not to recognize people from school. I hate not remembering things that have occurred in my own life. The only way for me to learn about my life is through pictures. Sometimes, I feel like a stranger in my own life.

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

I miss being able to run outside. I love to do activities outside – like playing kickball with my family or walking my dog. I also used to be a cheerleader and a ballroom dancer. I don’t see myself being able to do those things anytime soon.

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

I appreciate life. I do not allow little things to bother me or make me upset. I pay attention to the tone I use when I say things and to the words I choose. I have had people in a joking manner say, “Your accident was months ago. Isn’t that memory-excuse getting old?” They say it in a joking way, and, in the context of the situation, it was not a direct attack. But, it was hurtful. My TBI is a silent disorder, just like PTSD (post-traumatic stress disorder), Alzheimer’s, depression, and so many others. I never want to offend anyone, so I have learned to be compassionate of anyone with any disorder.

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

Memory loss is the worst outcome of my TBI. Some days, I look through pictures and feel like I’m looking at a stranger – and the girl in the picture is me. It’s an odd feeling to have everyone around you know more about you than you do.

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

Honestly, what works for me is to have a positive attitude and to be able to rise above the negative things people say. I am also helped by reading blogs online to learn how other TBI survivors live everyday life. My family has been my motivation to keep going.

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

I live with my boyfriend, Travis, now that my family has allowed me to return to Valparaiso. He is my primary caregiver. He does everything for me. He is my whole world. He drives me to my doctors’ appointments, to therapy, and to school, and he even helps me with my homework. I would not be able to go back to school or even try to get back to a normal life without him. My mother and I are very close, and my accident brought us even closer. She helps me calm down when I get upset and frustrated. She is a great listener, even when I call to tell her the same story for the third time in the same day. My mother is a hospice nurse. Her background and experience working with patients who need her to do everything have helped her to help me. My mother has a positive attitude, even when I say I can’t do something. She says, “Not yet, but you can do….” She will then list all the things that I have learned to do again.

16. Has your social life been altered or changed and, if so, how?Screenshot_2015-04-29-22-30-34-1-1

My friends are wonderful. But, I would love for them not to be so protective of me nor to change plans because they think that I can’t do something. I want to try and be normal like them. If I can’t do it, I just think, “I know they mean well. I think they need more time to get used to it all.”

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

My main caregiver is my boyfriend. I live with him, so he helps me get to school and to doctors’ appointments. Travis is my everything. He has made possible going back to living my old life. My mom is also my caregiver. She helps me with all of my doctors’ appointments and life-decisions. She and Travis work as a team to help me.

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

My future plans began with graduating in May from Purdue North Central with a bachelor’s degree in Biology. Ten years from now, I plan to attend veterinary school.

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 become overwhelmed with your current state. Don’t be afraid of the future. No doctor has all the answers, so don’t become discouraged if he or she can’t understand your TBI. No TBI is the same. Have faith.

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

Talk to those around you. Education about TBI to those who don’t understand will help spread the knowledge. Also, not being afraid to explain your TBI will help those around you understand and help you.

(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 Hayley Nichols.)

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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Caregivers SPEAK OUT! . . . . . Jeannette Davidson-Mayer

Caregivers SPEAK OUT! – Jeannette Davidson-Mayer

presented

by

Donna O’Donnell Figurski

jeannette davidson-Mayer 0417151. What is your name? (last name optional)

Jeannette Davidson-Mayer

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

New Plymouth, Idaho, USA     2004djmjdm@gmail.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 husband, DeWayne, has a traumatic brain injury (TBI). He was 38 when it happened. While serving in Iraq, DeWayne survived one Humvee rollover, two close-range IEDs (improvised explosive devices), one helicopter explosion (They were guarding a downed helicopter when the remains were blown-up for disposal), and lastly an IED that went off right under the command seat, where DeWayne was sitting. All this happened in 2005 between May 23rd and October 3rd.

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

At the end of October 2004, DeWayne was flown to Madigan Air Force Base in Washington State on the advance plane from Iraq. I made a few trips there to see him. He was allowed occasional trips home. By February 2006, DeWayne was home for good. We didn’t know DeWayne had a TBI until mid-2007. We just knew something wasn’t connecting right in his daily mental functions.

Were you the main caregiver?

Yes. Our daughter as well has learned to be a caregiver over the years.486770_10200560183360321_1086965832_n

Are you now?

Yes

How old were you when you began care?

33

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

No

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 above the call of duty. In mid-October 2014, I did have to quit working because DeWayne’s medical needs had increased. Also, I had gone to one of our smaller companies, which is a 10-minute drive vs. a 5-minute walk. DeWayne couldn’t comprehend this change, which created hardships for our daughter and for DeWayne and me as a couple.

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

I couldn’t make it without the love and support of our family, friends, and church family. Help is from driving DeWayne to assisting with happenings at home. Most of all, help is providing an ear to listen.

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

My quality of care has grown over the years. It took a while because I didn’t know how to ask for help. I was embarrassed to ask, and I didn’t understand how to ask either. I felt that if I couldn’t do it myself, I was failing my family.

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

No, but DeWayne was knocked out several times.

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)?

DeWayne had occupational, physical, speech, and recreational therapies as an outpatient. He also had behavioral health therapy.

How long was the rehab?

Rehab started out three days a week, eight hours a day, for three months at Idaho Elks Rehab. DeWayne was then moved to the Boise VA (Veterans Administration) facility, where he went several days a week. DeWayne still has recreational therapy, physical therapy, and occasionally occupational therapy. And, monthly behavioral health therapy.

Where were you when your survivor was getting therapy?

Idaho Elk’s Rehab, Boise VA Medical Center, Tri-Cities Physical Therapy, St. Luke’s Spinal Care

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

DeWayne has many difficulties. He has fixations. He’s easily lost, confused, and disoriented. He tires easily. His short-term memory is a problem. DeWayne doesn’t always understand what is happening around him or what is being said to him. Also we don’t always understand what he is trying to say to us. He suffers from migraines/headaches. He has silent seizures, bi-lateral hearing loss, tremors, and sensitivity to light.

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

I can’t really say if life is better or worse because of the TBI. We are both different from the deployment alone. I am the lucky wife because he came home alive, which is a celebration in itself.

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

There is a lot I miss (for example, long hiking trips and long conversations). But, the trade-off is worth it.

14. What do you enjoy most in post-brain-injury life?Jeannette Davidson-Mayer & DeWayne

We have learned to depend on each other completely – as spouses and as a family. We tend to stand up for what we believe in. We hold on tighter. We often show each other how important we are. We travel off-season, which is nice because the crowds are less. Nicer indeed!

15. What do you like least about brain injury?

We never know what to expect from day to day, yet it is also a positive, for we never have a dull moment.

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

Through many trials and errors, we have finally discovered our saving grace. Our kitchen has become our “Central Command Post.” Our lives center around our kitchen. We were able to set up an atmosphere that can adapt to DeWayne’s ever-changing daily new normal. Post-it Notes and whiteboard markers saved our family.

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

Of course, DeWayne’s TBI has affected home life, relationships, and so on. We have lost.

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

Our social life has been cut. We don’t go out as much. We avoid crowds, noisy situations, and places that make DeWayne uncomfortable. I also have become uneasy about the same things that make DeWayne uneasy.

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

Our plans for the future are to continue to live in joy and love together, to share our lives with our children as they continue to grow, to travel the world in an RV, and to reach out to others to show them that they have the inner strength needed to move forward. (How they move forward is unique to each family.)

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

Never give up. Give in from time to time. Let it out – cry or scream. Then look back on what is happening to find ways to make adjustments or to find solutions to the challenges. Know that you are not alone. You yourself, along with your family, have so much to offer.

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

Military families are not alone in living with TBIs and/or PTSD (post-traumatic stress disorder) and in being caregivers. We didn’t sign up for this life, but we have it. Now let’s figure out how to keep moving forward, so we can reach higher, dream bigger, and hold on tighter.

To learn more about Jeannette Davidson-Mayer, you can listen to her interview with me on “Another Fork in the Road” on blogtalkradio.com or at R4 Alliance.

 

Jeannette Davidson-MayerThank you, Jeannette, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.

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

(Photo compliments of Jeannette.)

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

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.

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.

Survivors SPEAK OUT! . . . . Michelle

Survivors  SPEAK OUT!  . . . . . Michelle

by

Donna O’Donnell Figurski

 

cartoon-hospital1. What is your name? (last name optional)

Michelle

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

Goldsboro, North Carolina, USA

3. When did you have your TBI? At what age?

A stroke occurred on March 31, 2011. I was 39 years old.

4. How did your TBI occur?

I had a stroke from a ruptured brain aneurysm on the right internal carotid artery.

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

I had been battling a persistent migraine for days. I knew that something wasn’t right that morning. I woke up with a stiff neck that I attributed to tension. I later learned that this is actually a symptom of a ruptured aneurysm. At any rate, I was taken to the hospital when I felt something “pop” in my head. This was just prior to lunchtime that day.

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

After a CAT scan (CT scan, computerized tomography), I was transferred by ambulance to the larger hospital at the University of North Carolina. In total, while I was hospitalized, I had two arteriograms; the aneurysm was treated by endovascular coiling; a drainage tube was placed in my head; and I was given various IVs.th

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)? How long were you in rehab?

I had three weeks of inpatient rehab, consisting of physical, occupational, speech, and recreational therapies. I also had three weeks of occupational, physical, and speech therapies as an outpatient.

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

I have several issues – balance, personality changes, extreme short-term memory loss, weakness in my right arm, weakness in both legs, mood swings, insomnia, anxiety (especially socially), chronic fatigue, and an increased frequency of headaches and migraines. I have also lost my verbal filter. I say whatever comes to my mind – good, bad, or indifferent.

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

I hesitate to call my life better or worse. It’s different. My judgment depends on my mood. I would say worse, but there’s a part of me that feels and believes genuine goodness will come from this struggle. My station in life is worse. I’ve lost my job, my home, and a number of my friends, and I ended up selling everything I own to live with family in another city. At the same time, I have developed such a genuine appreciation for the things in life that really matter. I have a level of compassion that was totally absent before. This is better than old me.

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

I miss being able to socialize or to join in with a crowd and have no problems. In my pre-TBI life, I was in a position of authority and respect in my company. I worked directly with the VP and department heads. I was respected and well-liked. I felt a great sense of pride in the work I did and in supporting the mission of my company. I miss that feeling of importance and respect.

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

I enjoy sharing my story with others. Many people tell me that I inspire them, which I always find surprising, as all I did was manage to live. But knowing that others are inspired because of something I said or did – that is my joy now.

13. What do you like least about your TBI?

I hate how dumb I feel sometimes – like when I just had something in my hand, set it down, and then can’t find it. I hate the short-term memory problems and the fatigue. The fatigue interrupts my ability to live a rewarding life on a large scale.

14. Has anything helped you to accept your TBI?

Going back to the early days of my recovery, I remember that thousands of people were praying for me even though I, myself, had lost my faith years earlier. Knowing in my heart that it was the intercessory prayers of all those believers that pulled me through – that is what has helped me accept the TBI.

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

The romantic relationship I was in at the time of the incident ended shortly after by his choice. I have dated since then, but I find it challenging – probably mostly because I’m self-conscious. Also, if the person didn’t know me before, then I appear to be pretty air-headed. I sometimes found myself becoming irritated with the person in general and needing a lot more alone-time. I am not living with family for the first time in over twenty years. My relationship with my oldest daughter is strained, due to conflicts we had early on in which I told her, “I should have just died,” and she screamed, “Fuck you!” at me. So I kicked her out of my house at 18 years old. We are still not on regular speaking terms.

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

My social life has been altered in a big way. I lost probably half of the friends I socialized with. They kind of just bowed out because I wasn’t too much fun anymore. When I do socialize now, it’s with a few close friends, usually at someone’s home for dinner. I’m almost always the first one to leave because I can only stand so much socializing before I have to shut down.

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

I am my own caregiver. In the initial days, my caregiver was a sister. However, she lives in a different state. She stayed with me for six weeks, and then she headed home. It seemed all was fine for a few months with me as my own caregiver. But slowly, over time, I began to realize that I was flailing (for lack of a better term). Today I live with my mom and dad, and we take care of each other. Mom is aging, so she can’t do a lot, but she does try. And it’s helpful just to have someone else writing the checks to pay the bills.

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

In the future, I would really like to be a patient advocate. I don’t even know how to go about getting into that type of field, but I found that I NEEDED that, and it wasn’t available to me. Nobody should have to navigate the quagmire of doctor appointments, insurance claims, insurance denials, applying for charity to help pay for long hospital stays, etc. without an advocate – especially not someone with brain damage.

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 TBI survivors with your specific kind of TBI.

Be kind to yourself. Resist the urge to make everything go back to normal. “Normal” is wherever you are at right now. Give time a chance to work its magic, and it will.

20. What advice would you offer to other TBI survivors? smartphone7Do you have any other comments that you would like to add?

See above. And get a smartphone if you can. =)

 

Thank you, Michelle, 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.

(Clip Art compliments of Bing.)

Caregivers SPEAK OUT! . . . . . Kristina Hopkins

Caregivers SPEAK OUT! – Kristina Hopkins

by

Donna O’Donnell Figurski

 

Kristina Hopkins - Caregiver Tom Hopkins- TBI Survivor

Kristina Hopkins – Caregiver
Tom Hopkins- TBI Survivor

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

Kristina Hopkins

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

Blum, Texas, USA

3. What is the TBI survivor’s relationship to you? How old was the survivor when he/she had the TBI? What caused your survivor’s TBI?

The survivor, Tom, is my husband. He was 25 years old when he got a moderate to severe TBI.

Tom was on his last of four deployments to Iraq. His camp came under attack, and the building he was working in shook because it was hit. He got hit in the head, we believe, and they found him on the floor. He has damage to the occipital and frontal lobes of his brain. His autonomic and limbic systems were also damaged. Those are the systems that make the body feel and move. Tom does not feel over 60% of his body, and he is losing the use of his legs.

4. On what date did you begin care for your TBI survivor? Were you the main caregiver? Are you now? How old were you when you began care?

I began taking care of Tom in early 2008. I am the main and only caregiver. I believe I was 31.

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

I was caring for two daughters, one with Asperger’s Syndrome.

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

I was working, but that changed.

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

I didn’t have any help. Tom does have a TBI service-dog. The dog, Duke, let’s him know every morning whether he will be walking or rolling in his wheelchair.

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

Tom started receiving partial help in 2008, and then he received full-time medical help in 2009.

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

No

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 this was happening?

Tom received physical therapy, memory therapy, and occupational therapy. All therapies were outpatient, except for the physical therapy. For that therapy, the therapists came into our home. Since moving to Texas two and a half years ago, I have taken over all of Tom’s therapy.

11. What problems or disabilities of your TBI survivor required your care, if any?

I assist Tom on all his ADLs (Activities of Daily Living). Tom cannot cook, so I do that. I handle the finances, with Tom’s help. I am the main driver. I am his therapist, whether it is physical or occupational therapy. I handle all appointments, i.e., I’m Tom’s “personal assistant.” (LOL)

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

My life has changed. I cannot say if it’s for the better or for the worse. We have learned to overcome Tom’s injuries and to adapt to them. It’s a lonely life at times, but I would not change my life. I am truly honored to be married to my husband.

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

I miss making plans a month or more into the future. We can’t do that now.

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

EVERY day is different. It can be exciting. Case in point – our Thanksgiving this year.

15. What do you like least about TBI?

I don’t like that people look at Tom as if nothing is wrong. They need to walk a day in his shoes or mine. Then they can decide.

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

I had to accept Tom’s TBI right away. There was no time not to.

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

Yes. We don’t go “out” as much. We cannot make plans for the distant future. We just take one day at a time.

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

What’s a “social life”? (LOL) We do get out now and then, but not often.

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

I cannot answer this question about my plans for ten years from now. I have no clue. We don’t plan that far in advance. In ten years, hopefully our daughters will be in college or in the military or just getting out. As for the two of us, my hope is to be where we are at now – taking it one day at a time.

20.What advice would you offer other TBI survivor caregivers? Do you have any other comments that you would like to add? 

Good question. I guess to answer that question would depend upon whom I am talking with. Not every caregiver is at the same stage. So my advice varies. I guess all I can say now is this: YOU ARE NOT ALONE.

 

Kristina Hopkins - Caregiver

Kristina Hopkins – Caregiver

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

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

(Photo compliments of Kristina.)

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

Survivors SPEAK OUT! Joey Buchanan

SPEAK OUT! – Joey Buchanan

by

Donna O’Donnell Figurski

 

Buchanan, Joey Injuries1. What is your name? (last name optional)

Joey Buchanan

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

Flovilla, Georgia, USA     Dekalbfd19@yahoo.com

3. When did you have your TBI? At what age?

Date of accident – July 18, 2012     Age at the time – 46

4. How did your TBI occur?

We were overhauling at a house fire (which means searching for hidden fire). I was standing against a wall, when a full sheet of sheetrock (4 ft. x 8 ft.) fell from a vaulted ceiling, striking me on top of the head.

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

Immediately. I was told that I fell into the wall, then onto the floor. I was asked twice if I was okay.  I don’t remember any of that.  It broke and cut my nose, and I could feel the blood running down my face.

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

Nothing major – just a routine X-ray and a cat (CT) 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)?
How long were you in rehab?

Yes – cognitive therapy, emotional therapy, physical therapy, and vestibular therapy.  I am waiting on a driving exam and endocrinology testing.  I am currently in therapy.

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

I have difficulties with balance, decision-making, and reading and comprehension. I’m more emotional (crying and anxiety). I have headaches, dizziness, and tinnitus. My sorting skills and my ability to multitask (very important for a firefighter) have been affected. I experience depression, fatigue, and pains in my neck, hands, and feet. My motivation is a problem.

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

The mental and physical issues have been difficult. I went from working two fire-department jobs, homeschooling our daughter, and building a pool house to spending most of my time in bed, due to fatigue, depression, pain, and lack of motivation. My wife and daughter both say that I am much more easy-going. I tell them, “Well, yes. I am not working 120-plus hours per week.” (LOL)

11. What do you miss the most from your pre-TBI life?Buchana, Joey & Fire Truck

My other family at the fire department

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

To be able (when I am able) to be home with my daughter, and the chance of starting a new chapter of my life

13. What do you like least about your TBI?

The fatigue, the lack of motivation, and the pain

14. Has anything helped you to accept your TBI?

My faith in God and the support of family and friends

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

It has been a mixed bag in my home life. Although I am home, the majority of my time is spent in bed.

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

Yes. We don’t go to concerts, and we don’t go out to eat. I try to avoid crowds. This is all due to overstimulation and anxiety.

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

My wife is my main caregiver. In some respects, I became her caregiver when she became ill in 2005.

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

I hope to recover as much as possible and to start a group that goes out and assists other first responders when they are injured and have to be home. In 10 years, I would like to be able to travel.

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 TBI survivors with your specific kind of TBI.

I want people to know that this injury will take much longer to recover from than they could ever imagine.

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

Try to keep emotions and stimulation to a minimum in the beginning – it will help in the long run. Find a support group – they have valuable knowledge.  Doctors are not always as educated on TBI as they need to be. The sooner you can accept the “new normal,” the easier it will be. Don’t ever give up or stop trying. Find an advocate who will help you in your journey.Buchanan, Joey

 

Thank you, Joey, 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.)

(Photos compliments of Joey.)

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.

 

 

 

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