TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Memory loss’

Survivors SPEAK OUT! . . . Su Meck

Survivors SPEAK OUT! Su Meck

presented by

Donna O’Donnell Figurski

 

 

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Su Meck – Brain Injury Survivor & Author of “I Forgot to Remember”

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

My name is Su Meck.

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

I currently live in Northern Virginia (USA) outside of Washington D.C.

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

3. My brain injury occurred on Sunday, May 22, 1988. I was twenty-two years old at the time.

4. How did your brain injury occur?

A ceiling fan in my kitchen fell and hit my head, knocking me down. As I fell, my head hit the kitchen counter, and then hit the floor.ceiling-fan-clip-art-1160226

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

My husband, Jim, was sitting right there at the kitchen table reading the Fort Worth Star Telegram when the ceiling fan fell on me. He saw the whole thing.

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

Jim called 911 right away. The ambulance came and took me to the closer (smaller satellite) hospital. But it was quickly determined that I needed to be at the bigger downtown Forth Worth hospital because that hospital actually had an MRI (magnetic resonance imaging) scan machine.

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

Whether or not I was in a coma depends upon which pages of my (handwritten) medical records one reads. I was definitely in and out of consciousness for a few days, but I am unsure as to if I was in an actual coma.

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?

Rehab? In Texas? In 1988? LOL! The “rehab” that I had was terribly inadequate, especially by today’s standards. I was assigned a physical therapist and an occupational therapist, but it is unclear what specifically those people did with me.

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

The most significant loss for me was experiencing total retrograde amnesia, which means I lost all of my memories of roughly the first twenty-two years of my life. Initially, both short- and long-term memory were affected. I did not recognize my husband, my two children (ages 2 and 1), any other family members, or friends. I also couldn’t walk, read, count, brush my teeth or hair, feed myself, etc. My personality post accident is the opposite of my personality from before the accident.

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

My life totally changed. Better or worse? It’s way more complicated than that. I don’t personally know what my life was like before the accident. I have to rely on the memories and stories of others who knew me. Which, by the way, really kind of sucks.

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

I don’t have any memory of anything from my life pre TBI (traumatic brain injury): all of my childhood/teenage/early adulthood memories, learning how to ride a bike, birthdays, grandparents, learning how to play piano and drums, vacations, my first crush, my first kiss, pets, losing my virginity, college-looking (the first time), sorority rush/initiation/parties/friends, meeting and falling in love with my husband, my wedding, the pregnancies of my two boys and their first years, and so many, many, many more …

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

Advocating for my fellow TBI survivors. I love speaking to groups of survivors, caregivers, and anyone really about what it is like to live with a TBI.

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

Nearly everything else

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

Even though there are still some days that I feel as though I can’t do, or understand, or remember a damn thing, the process of writing my book helped me to come to terms with how far I have actually come since my accident.

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

Oh yes! I don’t feel as if I am part of my family (my parents’ and siblings’ family). I think of my kids as more like my siblings. And my husband? Well … We are still married (33 years) … But since my accident, there have been some genuinely shitty times!

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

I’m sure it has changed in many ways, but one thing that comes to mind (and the thing that was most noticeable when I was in college at both Montgomery College and then at Smith College) is the fact that I feel way more comfortable around people in their 20s and 30s than I do around people my “real” age (50s).

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

Jim, my husband, is my main caregiver now. But at times, my children often took on the caregiver role because Jim traveled so much.

3 Su Meck & Jim 10835181_659603147482572_2314662174685025134_o

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

Wow! This is a tough one. I would love to continue writing (and publishing) stories, essays, lyrics, whatever. I always wanted to be part of a working/performing rock band, playing drums as well as singing. I want to become more proficient on the guitar, uke, and piano. I’d love to travel around speaking and educating people about what it is like to live in this crazy world as a TBI survivor. I’d love to move back to New England. I want to ski, and hike, and learn to swim. I’d love to have a dog (a service dog would be great to keep me from wandering). I want to take long extended vacations to Australia, New Zealand, England, Ireland, and even Canada.

19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.

Be happy with who you are now, even if you are one hundred percent different from the person you were before. Be honest with yourself and others. It is okay to ask for help. Graduating from Smith College in 2014 was a huge accomplishment for me. In fact, Smith almost did me in physically, mentally, and emotionally. But Smith also gave me a tremendous gift: An enthusiastic love of reading and learning. Keep learning!

I forgot to Remember Book Cover20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

Please buy and read my book, I Forgot to Remember: A Memoir of Amnesia. (I’m shameless!) And, if you like it, please write a positive review on Amazon and/or Goodreads. (Yes, I’m truly shameless!)

 

 

Please check out Su Meck’s book. It’s a great read!

 

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Brain Injury Resources . . . . . Movie Link – “Inside Out”

NOTE:     Although this link was active at the time of this posting, it no longer exists. Apparently, Disney has pulled the content due to copyright. I apologize for any inconvenience or disappointment. The updated link will take you to trailers.

Brain Injury Resources – Movie Link – “Inside Out”

presented by

Donna O’Donnell Figurski

Inside-Out-2015-Animated-Cartoon-Movie-HD-Wallpaper

Recently I published a short review of the Disney movie, “Inside Out.” The movie examines the inner-workings of the brain, and in particular the core memories of a youngster named, Riley.

Core memories are the essence of what makes up an individual.

thThe movie also explains, in its animated form, how both long-term and short-term memories are stored, retrieved, and sometimes lost forever.

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Although I watched the movie (twice) on Netflix, I’ve located it on the web for your easy access. I hope you will take the time to watch it. It’s fun … and informative!

Enjoy “Inside Out.”

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Survivors SPEAK OUT! Natalie Collins

Survivors SPEAK OUT! Natalie Collins

presented

by

Donna O’Donnell Figurski

 

 

Natalie Collins - Brain Injury Survivor

Natalie Collins – Brain Injury Survivor

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

Natalie Collins

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

Shreveport, Louisiana, USA

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

I was 34.

4. How did your brain injury occur?

In a car accident

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

Immediately after the accident

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

None

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

I wasn’t in one.

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 outpatient physical therapy for six months.

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

I have problems with balance, perception, and personality, and I suffer from mood changes.

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

My outlook on life is better, but I still grieve the “old” me. The worst is knowing I will be forever changed.

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

I miss being able to read a book.

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

I enjoy people more and “stopping to smell the roses,” as that old cliché goes.

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

I dislike needing constant assistance because of my memory.

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

I found it helpful to take Sticky Notes everywhere.

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

Yes. My current husband didn’t understand how big of a job it is to take care of me. As a result, I hide a lot of my disability. I also have to stay in the kitchen while cooking.

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

Absolutely. I really don’t have a social life now. Before the accident, I had all sorts of people to hang out with.

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

My mom has been a great help teaching me how to do stuff and not doing it all for me.

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

I honestly don’t know what I’ll be doing in the future. It depends on if this head injury allows me to continue my education in counseling.

Natalie Collins - Brain Injury Survivor

Natalie Collins – Brain Injury Survivor

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 advice is to take notes everywhere, especially doctors’ offices. (I had a friend who made me make a daily list, so I would remember even to take a bath. If you’re like me, you won’t remember why the stove is dinging.) Keep a set routine. Stay in the kitchen when cooking.

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

All I can say is “Notes everywhere.” Sticky Notes are fairly cheap in comparison to forgetting really important stuff.

 

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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(Photos compliments of contributor.)

 

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On the Air: . . . . . . . . . . . . “Another Fork in the Road” Panel: Cognitive & Memory Deficits After Brain Injury

On the Air: “Another Fork in the Road”

Panel: Lisabeth Mackall and GeorgeAnna Bell

Cognitive & Memory Deficits After Brain Injury

presented

by

Donna O’Donnell Figurski

images-1Memory loss and cognitive deficits are both prevalent for many survivors after brain injury. Memory loss literally leaves many folks feeling a loss of control over their lives. Cognitive deficits can leave one feeling less than whole.

Lisabeth Mackall Book 061215

Lisabeth Mackall – Caregiver, Author, Speech Therapist

 

My panel, caregiver, Lisabeth Mackall and survivor, GeorgeAnna Bell joined me to discuss how memory loss and cognitive deficits affect them personally and how the deficits hinder their family dynamics. They offered suggestions that have worked for them.

Click on the link below to listen to the show.

GeorgeAnna Bell - Survivor

GeorgeAnna Bell – Survivor

 

 

See you “On the Air!”

On the Air: “Another Fork in the Road”

Cognitive & Memory Deficits After Brain Injury

(Clip Art compliments of Bing.)

(Photos compliments of panelists.)

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SPEAK OUT! NewsBit . . . . . Mental Decline Causes a Hero of Super Bowl XL to Regret Playing Professional Football

Mental Decline Causes a Hero of Super Bowl XL to

Regret Playing Professional Football

presented

by

Donna O’Donnell Figurski

 

Newsboy thAmerican football wide receiver Antwaan Randle El, who played for the Pittsburgh Steelers, is fondly remembered for doing a reverse and then throwing a touchdown pass to ice the National Football League’s Super Bowl XL, played February 2006 against the Seattle Seahawks. The final score was 21-10.

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Antwaan Randle El #82 former Pittsburgh Steeler

Randle El retired early in 2010. Now 36, he has trouble with his memory and has difficulty on stairs. He fears what the violence of football has done to his brain and regrets playing professionally. An all-around athlete, Randle El had been drafted by the Chicago Cubs, a U.S. professional team in Major League Baseball, but his life-path brought him to football. He said in an interview by the Pittsburgh Post-Gazette, “If I could go back, I wouldn’t (play football.) I would play baseball.”

 

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Antwaan Randle El – former Pittsburgh Steeler

Randle El wants to see his kids grow up and to know his grandkids. He is aware of recent brain research and the problems associated with playing football, so he is worried about his own neurological health. He said, “It’s a tough pill to swallow because I love the game of football. … It just comes down to it’s a physically violent game. … I wouldn’t be surprised if football isn’t around in 20, 25 years.” (Full story)

 

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Survivors SPEAK OUT! . . . . . Pam Richardson

Survivors SPEAK OUT! Pam Richardson

presented

by

Donna O’Donnell Figurski

Richardson, Pam McClurg 11. What is your name? (last name optional)

Pam Richardson

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

Louisville, Kentucky, USA    pamr1672@yahoo.com

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

My brain injury happened in 2004. I was 46.

4. How did your brain injury occur?

I had a colloid cyst removed. It’s a benign brain tumor located in the third ventricle of the brain. Not much is known about a colloid cyst. It is thought to be something one is born with, but symptoms occur later in life.

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

I had headaches and dizzy spells for years. I went to all the appropriate doctors. I was diagnosed with sinus headaches and Meniere’s disease (an inner ear disorder causing dizziness).

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

I was passing out and falling down. A CT scan (computerized tomography, also known as a CAT scan – computerized axial tomography) showed that the tumor was cutting off my CSF (cerebrospinal fluid) in my brain. I was urgently scheduled for removal of the tumor the next day. I had a ten-hour surgery with a craniotomy (surgical opening of the skull) for the complete removal of the tumor.

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

I was not in a coma. However, I had no memory.

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 no rehab. After a year, I realized there had to be help for people like me, and I started getting on the computer. However, my short-term memory was terrible. I found the Brain Injury Alliance of Kentucky, and they changed my life! But I don’t remember. 😦

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

I have short-term memory loss, although my memory is (thankfully) getting better all the time. I made terrible decisions. I divorced my husband and don’t remember it. When people say, “Live in the moment” – that is what I did. It is a HORRIBLE PLACE TO LIVE! I have no concept of the past to be able to reference, and I have no ability to think of the consequences of my decisions for the future. I bought cars for both of my sons. I bought clothes I would never wear. I couldn’t remember what kind of food I liked to eat … and lots more I can’t think of right now. Oh, I tried to go back to work, but I couldn’t remember what I used to do.

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

My life is completely turned around. I was married to a physician. We would travel. We had a good time. We had a great life. I screwed everything up. I divorced him – don’t know why. I came to a realization a few years ago that I had to accept the NEW ME because that is the life I have now. No looking back. Accept where I am now. Live forward from today.

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

I miss being married. But it’s OK, and I’m still young. 🙂

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

I like that I have the ability to relate to others about traumatic brain injury (TBI). I love to help others. I am much more “healed” than I was when I started on this journey. Of course, each year I thought I was feeling much better. What I have learned is that it is a life-long journey.

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

I dislike my short-term memory issues.

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

God – and my family and friends

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

Yes, as mentioned above. Also, you really learn who your true friends are. People just don’t understand TBI.

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

My social life has changed completely. When you don’t “remember” to call your friends back time after time, there is a time when they don’t call you back.

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

At first, my main caregiver was my husband. But after I left, it was my sister. She still is there whenever I need her.

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

I don’t really know what the future holds for me. I now have grandchildren who are the love of my life. I take one day at a time.Richardson, Pam McClurg 2

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.

I wish I would have known more about what would really happen AFTER my surgery. I was told I might have a few memory problems – but nothing like what I have experienced. Of course, I had no time to prepare, nor would I have remembered it. Nevertheless, my family would have been more educated and informed. Physicians need to be educated about brain injury!

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

YOU WILL MAKE IT! Think positive! Have a good support system! Go to support-groups. Get online to support-groups. There are resources in your state and in your community. Never, ever give up. YOU ARE WORTH 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.)

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.

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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.)

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Survivors SPEAK OUT! Juliet Madsen

Survivors  SPEAK OUT!  Juliet Madsen

presented by

Donna O’Donnell Figurski

#4 Juliet Madsen 21. What is your name? (last name optional)

Juliet Madsen

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

Parker, Colorado, USA     juliet@strokeofluckquilting.com

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

I had three strokes (2004, 2009, and 2010), and I have a traumatic brain injury (TBI). I was 33 in 2004.

4. How did your brain injury occur?

My brain injuries are complex: heat strokes complicated by a traumatic brain injury in Iraq in 2004. I was being moved to a secondary location because of a heat injury, when there was a series of explosions on the highway. So, I have the illustrious honor of having both a brain injury as a result of heat injury and then a traumatic brain injury. This creates a problem for the doctors because I do not fall into any one category. I have very complicated neurological issues.

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

My family and the people I was stationed with in Iraq realized there was a problem. I was not making much sense when I wrote patient notes and when I wrote letters home. Then my speech was becoming garbled. I exhibited a halting speech pattern, in which I had trouble “spitting out” words. I also had tremors, which made even the simplest tasks difficult. #3 1454864_10200875275550279_968652467_n Manual dexterity issues, massive migraines, and balance problems caused my unit to put me on night shift and to adjust how and where I was living in Iraq. Then I was being transferred north where I could work in a more controlled environment when we were involved in a series of vehicle explosions. After that event, I was sitting with a few of the guys at the chow hall, and I said that “I didn’t feel well.” I suffered a seizure in the chow hall, and that started my slow trip home.

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

I had emergency care to stabilize me in Iraq, then in a C-130 flying from Iraq to Kuwait, then again from Kuwait to Germany, and again to Walter Reed, and then to Ft. Bragg.  Although I know I had care to treat seizures and stroke, I only have very few bits and pieces of my memory from that time.

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

No, I was not.

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 have had rehab both as an inpatient and as an outpatient. I am in and out of occupational, speech, physical, and recreational therapies even today. I have gone in and out of these therapies, as my TBI symptoms change over the years. I have often described my TBI as causing “rolling blackouts.” The polytrauma team that treats me has been really good about getting me in to see the appropriate team.

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

That is such a loaded question…. Initially I had left-sided weakness from the stroke, difficulty talking, balance issues, drop foot, short-term memory loss, major time perception problems, migraines all the time, and ringing in my ears. I was sound-sensitive. I have constant neck and head pain. I have hearing and vision changes (which the doctors tell me are a direct result of the TBI). I absolutely have personality changes. I was someone who always got along with people, worked as a paramedic, and did research. Now I have no concentration, I am angry with everyone, I am short with people, I cry easily, and I feel very defeated. Even with all of the incredible accomplishments in my life, I am disappointed in the perceived failures in my day-to-day life. I have had times since my brain injury when it is like I forgot who I was or what I have always stood for, and I hurt the ones who have always cared for me. I have major learning disabilities. I can’t do anything with numbers or time, and learning new information is extremely difficult – this from someone who graduated from college with honors. Concentration and accomplishing simple tasks are often very difficult.

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

My life has changed 100%, but I can’t say that it is worse because I am still here. So, that is a good thing, but it is very different. I was a paramedic in the United States Army. I was always busy working, and now I am retired. I become tired and overwhelmed far too easily. I quilt for a living, and I make quilts for programs across the country. I am on the Board of Directors of a national non-profit organization that works with programs for the families of military and veteran personnel with TBI/PTSD (post-traumatic stress disorder). The organization provides other programs through recreational and activity-based services. This is a very different place from being a paramedic and saving lives.

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

I admit that I miss who I was before I was hurt. I miss being able to go to the store alone. I miss being able to be trusted with my own finances or being able to read a recipe and understand it the first time I read it. I had a very definite plan for my life, and my injuries changed all of those plans. I miss feeling like I really contribute to my family and to the world around me.

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

I try to enjoy simple things: butterflies, the pure joy of my dogs lying with me, my kids telling me that they love me, etc. I like learning new recipes, listening to music, or holding hands with my husband in case I can’t tomorrow. Basically, I try to enjoy this moment because I know that tomorrow isn’t promised.

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

I would give anything to trust my memory and my body again. But, if I could have one wish, it would be to have my memory back. I have no memory of any of my kid’s proms, their birthdays, their graduations, etc. I wish I could just remember these events for their sakes.

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

#8 Juliet & Peter MadsenMy family has helped me to accept my injuries because, although we joke around, they accept me for all that has happened. I was so angry and really emotionally crushed when I first came home. The only thing that I can always count on is my family, no matter what. The only other thing that has probably helped is time.

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

My husband, Peter, and I are so lucky to have each other. After twenty-three years together, I am thankful that this injury has not torn us apart, but it came very close. A TBI is exhausting for everyone involved, and I think that the first few years are spent in emergency mode – performing triage. Then as we started to get comfortable with how things were going, my brain “kicked us” – I suffered another stroke. We had a whole new series of issues and rules to learn. Peter and the kids have been incredible at supporting me. Although it has been a really rough road, we have been through it together. We are stronger because we are always together, and that part I am thankful for.

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

Yes, I have actually lost friendships because of my TBI. I describe myself as a “golden retriever.” (I am excited to see you, but if you leave the room and come back in, I don’t know how long you were gone, but I am still really excited to see you.) It is because of this lack of the concept of time that I have lost friends. Also I wasn’t good enough at keeping in contact. I had a friend call me and tell me that I wasn’t an attentive enough friend. So now, I tell every potential friend this cautionary story. But to be honest, I don’t really try to make friends any more. Most people don’t understand me – or our family. Because of that, we are very private people. We don’t do a whole lot with others. It’s just easier that way. We would prefer to have lots of friends, but it just isn’t that easy.

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

My husband, Peter, is my main caregiver. I am so very thankful to him, in love with him, indebted to him, sorry, and every other adjective I can think of. I have moments of clarity when I see how terribly hard all of this is. It kills me that I have become a burden, and yet I am still his wife. I’d also like to say that I have had to watch my kids become my caregivers. They have taken care of me on too many occasions to count. It is incredibly hard on the entire family. They all suffer from PTSD as we go through this process. They all deserve so much more credit than they get for surviving this experience.

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

I am ten years out from my injuries, but I am light years from my initial injuries. I hope to continue my physical improvements, and I would like to recover better in terms of my learning disabilities and mental health. I would like to go back to school and get a degree in Art Therapy to help other veterans and their families with TBI and PTSD. In ten years, I would really like to be working with military families through art in my own program. I would also like to have published my own quilting book.

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.

There are so many setbacks during the recovery process. I never seem to be where I am supposed to be. But, I never stop because there are no set rules and no one is saying where you have to be. So, just keep going – never give up.

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

I think the worst thing I do to myself is to constantly beat myself up about what I could have or should have done to either prevent this or to change it now. It kills me to know where my family is and how my family has been changed forever because of all of the things that happened since 2004. I would give anything to change it, but I can’t. On good days, I can accept it and move past it, but on bad days, I can’t. It hangs over me and suffocates me. It is my wish that others out there like me hold on and cherish the life you have because no one can live it like you can.

Thank you, Juliet, for taking part in this interview. I hope that your experience will offer some hope, comfort, and #6 Juliet Madsen Snowinspiration 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 Juliet.)

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 lower right corner of your screen.

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

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SPEAK OUT! Faces of Brain Injury Faith Neaves

Brain Injury is Not Discriminatingbigstock-cartoon-face-vector-people-25671746-e1348136261718

It 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 – one view at a time.

Faith Neaves (survivor)

11104222_10153117046022976_1329541496_nAbout seven years ago, I suffered a traumatic brain injury from a domestic-violence incident. My ex-husband knocked me completely unconscious when I walked around a corner. I was eight months pregnant at the time. I remember opening my eyes and not being able to see. I was lying in a puddle of blood. I never got help. I was too afraid because he was in the military. As I went in and out of consciousness, I wrote my little girls goodbye letters and hoped for the best. After that night, things were never the same. I struggled with severe depression, anxiety, crying spells, memory loss, raging, etc. – you name it. My moods would switch quickly. On a daily basis, I would forget names of people I knew or directions to places I used to go to. For the past eight years, I have been wrongly diagnosed as bipolar. I struggle with suicide, and I almost succeeded, which ended up with my being hospitalized and having more meds. Finally, I was diagnosed with a very severe frontal lobe brain injury with no hope of recovering. The doctor told me that I have a “light switch,” where most people have “thermometers.” It affects my personality, emotions, speech, and sleep. My brain has trouble with cognitive abilities, problem-solving, and conversations. I interrupt people a lot due to my brain trying to get out a word. I struggle with fatigue. The worry, anxiety, and depression are a lot to deal with, but at least I know that it’s not my fault – that it’s not from my being bipolar. 11077229_10153117046027976_657824417_nI have been exhausted, and I have felt crazy and indecisive. I have to write everything down on sticky notes – I forget dates, my phone number, and my address. My in-laws and family have judged me as crazy, having red flags, etc. – you name it. I feel they have no empathy. I’m not a victim, but a SURVIVOR. I miss me. I am devastated at who I used to be and what I have lost. I thought this was temporary and due to stress. I’m only 35, and I’m scared for my future. I’m devastated to carry the ugly scar now on both the outside and the inside. I pray that I will find love and support somewhere.

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:

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Survivors SPEAK OUT . . . . . John May

Survivors  SPEAK OUT!  … John May

by

Donna O’Donnell Figurski

May, John E. 1

John May TBI Survivor since 2007

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

John May

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

Boston, Massachusetts, USA     johnmay@mindless.com

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

My brain injury occurred in 2007. I was 49.

4. How did your TBI occur?

This is a question that confuses me. My brain injury was not due to an accident, but to an infection.

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

I lived in Ft. Lauderdale at the time; I owned a house; I was a decorative painter; and I owned a tattoo shop. I, with the help of a partner (a world famous tattooist), did all the bookwork and the management of our employees. This was all possible due to my having ADHD (attention deficit hyperactivity disorder) because I needed only three or so hours of sleep a night. I got lost driving to the supermarket less than a mile from my home. That night, I went to sleep and never woke up.

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

I was taken to the hospital in an ambulance. After a few days, my skull was opened. Most of my left temporal lobe and other areas on the left side of my brain had disintegrated. They cut out areas of my brain that were infected. My friends and family were told that probably I would never regain consciousness and that, if I did, I would never walk or talk again.

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

Yes. My coma was for a few months. I was kept alive only because my family and my friends were fighting a legal battle over who had the authority to make the decision to end life-support. One court had given my family the authority to disconnect me, but my friends appealed this ruling because my business stated that I had given them the authority to make that decision, until there was a second option. While they waited for a new court date, I woke up with no past memory and with the intelligence of a three-year-old.

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?

Once out of my coma, I drove the hospital crazy due to my constant curiosity and the fact that I laughed at everything. I was put into a rehab hospital for about nine months. There I was taught the basics of life. I’m proud that, although I didn’t even know how to shave or brush my teeth, I never dirtied my diaper.

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

My mostly always being happy was thought to be a symptom of brain damage, but it was eventually discovered that I’d been that way since birth. It was as though I was mentally challenged as a baby because I never cried.

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

The struggle over me and my property went on. At the same time, the value of my real estate crumbled with the recession. I’m lucky enough not to remember my life before my injury. I have no clue as to what I owned, but it was battled away. I no longer speak with my family. They sucked me dry of my money and then put me into a homeless shelter. I have learned much in only seven or eight years. It’s not clear whether I have relearned things or whether I have simply remembered what I know now. As long as I have a hat on to cover the huge dent in my head, people wouldn’t know I had brain injury.

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

I don’t know my pre-brain-injury life.

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

I enjoy knowing I have people in my life like Ali.

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

I wouldn’t know.

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

My true friends stuck by my side, but I kept a distance for a time while I relearned the basics of life. I now live in Boston and have a group of friends that never knew the old John May.

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

I don’t have many people to interact with. As such, I spend a lot of my time alone.

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

I am proud to state that I am my main caregiver.

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

One effect of my brain injury is that I have no conception of time. I might think that it is the 4th of July one minute and Christmas, the next.

18. 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 brain-injury survivors with your specific kind of brain injury.

I read all the brain injury sites and communicate with some.

May, John E. 3

John May – TBI Survivor (since 2007)

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

Don’t get angry with those who love you. They are having a hard time understanding brain injury. They need as much help as we do!

Thank you, John, 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 John.)

 

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