TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘SPEAK OUT!’

Survivors SPEAK OUT! Shelly Millsap

Survivors SPEAK OUT! Shelly Millsap

presented

by

Donna O’Donnell Figurski

Shelly Rupert Millsap - Brain Injury Survivor

Shelly Rupert Millsap – Brain Injury Survivor

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

Shelly Millsap

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

Glendale, Arizona, USA

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

My brain injury happened on January 17, 2013. I was 46.

4. How did your brain injury occur?

I was in a freak accident at home – a bottle of homemade ginger ale exploded in my face.dcredykoi

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

I realized I had a problem approximately 1-2 weeks after my accident.

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

I was taken to the Emergency Room for CT (computerized tomography) scan.

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

I was knocked unconscious for about twenty minutes.

8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)?

I had to do rehab to relearn to walk correctly and talk correctly. I still do home therapy – I’m trying to regain abilities for a lot of things that I once could do easily and now cannot.

How long were you in rehab?

A few months

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

gg61447820I have severe PTSD (post-traumatic stress disorder) and cannot be around loud noises or big crowds. I have issues with being in new environments. I tire very easily. I don’t understand people when they talk too quickly. I can’t remember new information very easily. I get lost easily or become disoriented. I have balance issues. I have a bit of anger inside that wasn’t there before … the list goes on and on.

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

I can’t say that my life is better, but I refuse to say that it is worse. It is a work in progress. Life is full of ups and downs. I have always been a person who likes to take care of people. It is hard for me to let anyone take care of me. My life has changed in the mere fact that I need help with certain things … I used to be very independent. I still am, but I know that I have limitations now.

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

I miss being out-and-about without worrying that the noise will be too much or that I’ll be in a situation that will mentally paralyze me. I miss the ability to get into my car and know that I can drive myself anywhere I want to go.

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

I enjoy seeing the changes that have happened to my immediate family. They have become more compassionate.large_familylovetitle

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

I dislike my new limitations and the loss of who I once was intellectually.

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

God. I’ve always had a strong faith, and I know that God isn’t looking down and laughing at me. This didn’t happen because of some sick joke. God is going to use me and my experience to help someone else. I believe that we all have the choice to have a good day or a bad day. When I wake up, I choose to have a good one. There are things that come into my path at times that aren’t always pleasant, but I try to not focus too much on that and move on.

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

Yes. I have friends who have a hard time with this and really don’t call or communicate much anymore. I understand. It’s hard for some people. I don’t worry myself too much about what is out of my control with people who don’t understand. I just try to focus on the people who are still around and cherish them.

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

I can’t go out a lot because of the noise. I don’t handle situations very well when I don’t know what is going to happen. I can’t be spontaneous. I have a hard time going to movies because of the noise. It’s hard going out to eat at times. But I do get together with my good friends a lot.

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

Shelly Rupert Millsap - Brain Injury Survivor Bob Millsap - Caregiver

Shelly Rupert Millsap – Brain Injury Survivor
Bob Millsap – Caregiver

My main caregiver is ME … with some help from my husband.

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

I’m not sure. It’s hard for me to look that far into the future. So many things have changed in my life that I kind of take it day to day. My main goal in life is to help people, and I plan on continuing to do that. I think that we should all give more than we take from this world. That is how I live my life. I’m not a “people-pleaser.” I could care less sometimes if I please someone. I hate that term. I do things because they need to be done. I just try to treat people the way that I want to be treated.

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.

Gosh, that is a hard one. I am tired and can’t think of anything right now.

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

No matter what your circumstance, there is always someone else out there who probably has it worse. If you are having a bad day and are feeling hopeless, remember that tomorrow is just around the corner and that most likely it will be a better day. You can pick yourself up and make the most out of what you still have. Life is a precious thing. Live it, love it, and be around people who love you as you are.

NOTE:surviving-brain-injury-stories-of-strength-and-inspiration

Shelly is a contributing author on”Surviving Brain Injury: Stories of Strength and Inspiration,” which will be available in mid November 2016. You can order the book by clicking the title. The book includes stories from about 80 brain injury survivors or caregivers.

 

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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SPEAK OUT! . . . . . . . . . . . . . Guest Blogger . . . . . . . . . . . . . . . Deb Angus – Just Blew Me Away

Just Blew Me Away …

by

Deb Angus

presented

by

Donna O’Donnell Figurski

 

Girl Blogger cartoon_picture_of_girl_writingMy husband and I used to be avid bicyclists all throughout the trail system here in Calgary (in Alberta, Canada). Sometimes we would be out and about for the whole day, putting on as much as 50 km (31 miles). Mostly this was back in ‘83 to ‘88. Then we bought a house. The trail system wasn’t as good in that neighbourhood. As a result, we only went sporadically over the following years.

Even that came to an end in 2001, when I sustained a TBI (traumatic brain injury) at the hands of a distracted driver who hit us while we were stopped at a red light. Because of ongoing balance issues, I no longer had the desire to ride my bike again. (So sad the things we lose because of TBI.)

Deb Angus - brain injury survivor and author of “Regaining Consciousness: My Encounter with Mild Brain Injury--the Silent Epidemic"

Deb Angus – brain injury survivor and author of “Regaining Consciousness: My Encounter with Mild Brain Injury–the Silent Epidemic”

Then in 2006, I had an idea about someday getting myself an adult tricycle. That way I would not have to worry about my lack of balancing skills – especially when you have to do a shoulder check (scanning over your shoulder without making the bike swerve). But because we were then living in apartments, storage was an issue. My dream of getting a trike never came to fruition … until this year!

My husband was diagnosed with stage IV colorectal cancer in March 2015. He died April 1, 2016. It has been pretty rough. We had been together for 37 years. I have also been dealing with my own kidney failure since August 2013, and I do peritoneal dialysis every night for 8-9 hours. The waiting list for a transplant in our province is 6-8 years, so I have a ways to go yet. With my husband’s passing, I wanted to start doing things that would get me outside more often and be more active. I also wanted to do something to keep me busy for our wedding anniversary and my birthday, which were coming up on June 30. So I came up with a grand idea that if I could find a “folding” trike, I could then store it in the back of my car. And that is exactly what I’ve done. I wasn’t able to find such a trike locally, so I had to mail-order one and put it together.

Deb Angus - Brain Injury Survivor and her Trike

Deb Angus – Brain Injury Survivor and her Trike

On my very first ride, I drove down to the area of the city where my husband and I used to live back in ‘86 and ‘87. Talk about a trip down memory lane! Within seconds of riding my trike, I felt like I was 32 years old again – whizzing down the tails we used to ride with wind blowing through my helmet and hearing the birds singing and chirping along the way. The freedom I felt at being able to ride again … was fantastic! Then tears came to my eyes because my husband wasn’t here to enjoy this with me …. But as I was heading back to the car after about an hour of riding, I noticed in big letters written in chalk on the asphalt trails the words Love U. I knew then that my husband was there in spirit. I felt that he was so proud and happy that I had finally managed to get my trike and that I will enjoy many more great rides.

 

Thank you, Deb Angus.

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

(Clip Art compliments of Bing.)

(Photos compliments of Deb Angus.)

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Survivors SPEAK OUT! . . . Gretchen

Survivors SPEAK OUT! Gretchen

presented

by

Donna O’Donnell Figurski

Gretchen - Brain Injury Survivor

Gretchen – Brain Injury Survivor

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

Gretchen

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

Louisiana, USA

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

I had just turned 20.

4. How did your brain injury occur?

My brain injury is from a car accident. My best friend was driving. I was sitting on the console and flew into the backseat. The driver was ejected, and she was killed instantly. Another friend with us, who was sitting in passenger’s seat, just had stitches.

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

I was medevacked to a hospital right away and stabilized. I was then flown to a larger hospital. I knew one of the emergency responders, and he said he recognized my brain injury from the way I was breathing. I was also erratic and trying to move and fight and get up, but I had a head injury. Another responder told me that he had to almost lie on me to keep me still.

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

I had a PEG (percutaneous endoscopic gastrostomy) tube (to add nutrition directly into the stomach), a halo brace (a metal ring attached to the head and shoulders to immobilize the spine) because I had a broken neck (fracture of the C2 vertebra), a tracheotomy, and the usual IVs and ports.

Gretchen with Halo Brace

Gretchen with Halo Brace

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

Yes. I was in a coma for three and a half 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 had some physical therapy, but mostly I had cognitive therapy. I had both inpatient and outpatient rehab.

How long were you in rehab?

Inpatient rehab was about a week. Outpatient rehab was for several weeks (a couple of times a week).

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

I have no physical problems; they’re mostly cognitive. I have some personality changes. My family has voiced this to me. I have no control over it, but I do feel it, and I feel so uncomfortable with it. I’m not happy and confident and wonderful. That doesn’t come naturally to me anymore.

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

Worse. I am almost always anxious and uncomfortable.

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

I miss my friend and my carefree and happy self.

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

I guess I just have to enjoy living life. That’s all I have. I take it one day at a time.

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

My brain injury took a part of me that I was happy with – my confidence and my peace. I hate that about it.

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

I just do. I have to accept it.

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

My relationships have definitely been affected – both romantic and friendship. I fought the change with my boyfriend at the time, but he recognized it. We ended up breaking up after several years. My friendships are also different. I find it difficult to talk and keep in conversation. It’s hard to find stuff to say to people I was so close to before. It makes me so uncomfortable, although it could also be from our drifting apart naturally. It’s like I feel cold to them, but I don’t intentionally try to act that way.

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

Yes. I’m so anxious all the time. I’m very uncomfortable with myself.

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

My aunt was my caregiver right after I got out of the coma. I am my own caregiver now. I live on my own. My dad has to work, and my mom didn’t feel comfortable doing it. We live right next door to each other, though.

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

I want to be happy. I have a degree in English. I hope to write more. I have been published twice, but I haven’t gotten back an email or a response. I was a French major, but I lost it all after the accident. I was heartbroken.

Gretchen - Brain Injury Survivor

Gretchen – 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.

Nothing I can think of

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

Take it one day at a time, and don’t be hard on yourself. Love yourself. Again – don’t be hard on yourself!

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:

Feel free to leave a comment by clicking the blue words “Leave a Comment” below this post.

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If you like my blog, click the “Like” button under this post.

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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.

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

 

As I say after each post:

Feel free to leave a comment by clicking the blue words “Leave a Comment” below this post.

Please follow my blog. Click on “Follow Me Via eMail” on the right sidebar of your screen.anim0014-1_e0-1

If you like my blog, click the “Like” button under this post.

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

If you don’t like my blog, “Share” it intact with your enemies. That works for me too!

SPEAK OUT! . . . . . . . . . . . . . Faces of Brain Injury . . . . . . . . . Bob Bernardi (survivor)

SPEAK OUT! Faces of Brain Injury –  Bob Bernardi (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.

 

Bob Bernardi - survivor

Bob Bernardi – survivor

Bob Bernardi (survivor)

Recently was an anniversary. It’s been 24 years since that terrible day back in 1992, when I lost control of my car and suffered my traumatic brain injury. Needless to say, I have experienced a lot of life’s lessons – both good and bad. I am still here, and I have accepted my standing in life, but that is not to say that I am not a fighter. If I feel that something is not right with my care or if I have questions, then believe me when I say I am going to express my concerns or ask my questions! I have had the very best in medical care and some of the worst, and, for that reason, I will not just “go with the flow.” I am sure that most of you know that, when the human brain is hurt and damaged, that alteration is an alteration to “us.” Our brain is “us.” Just trying to get back to our original selves is what we strive for. I know I can be a pain to many of my friends outside of the brain-injury community with how I view everyday life. But all that we have shared in the brain-injury community make us friends. I know that I depend on their views. I would be lost without the brain-injury community, and for that I am thankful!

 

Thank you Bob Bernardi for sharing your story.

 

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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

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

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

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

Feel free to “Like” my post.

 

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

SPEAK OUT! Itty-Bitty GIANT Steps

presented by

Donna O’Donnell Figurski

 

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

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

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

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

 

Here is this week’s Itty-Bitty GIANT Steps

georgeanna-bell-survivor-091016GeorgeAnna Bell (survivor) … For the first time, I took a shower sanding up! Normally, I use a shower-chair because of dizziness, but I was fine standing. I was supposed to get a Disability Room. I guess what I had was one to some degree. gg57881072I was looking forward to a walk-in shower, so I could place my walker into the shower and use it as a chair, but my room had a tub. I was extremely cautious, but I did it! I am so happy!

 

cat-brubaker-survivor-090916Cat Brubaker (survivor) … Today I used the oven – TWICE – all by myself! And I didn’t burn anything down. I got a little “fancy” (I added my own thing). I kept the timer with me at ALL TIMES.

cats-quiche

crustless, veggie butternut quicheTIMES.

 

 

 

 

 

sallie-stewartSallie Stewart (survivor) … Big win in life for me! (It may sound small and trivial to many.) I have said it before – I have this swallowing challenge. Nerve damage is some of it; synching of the epiglottis and trachea is also a problem. Then there is this crushed-disk issue with my jaw. Orthodontic braces were put on two years ago in hopes that things might change. They did. There are still challenges, but today was a great day! I ate ALL of my Eggs Benedict, ALL of my lunch, and ALL of my dinner. thAnd several snacks in between. I can chew – on BOTH sides of my jaw. It’s a giant win in life for me! I feel strong. It’s been a true challenge to try to find the majority of my nutrition in a blender. It was so nice to really be able to chow-down food. These braces come off soon. And for that, I am happy. But I’m not nearly as grateful for that as I am for being able to chew pain-free. My heart is full! A strong full!

 

YOU did it!

Congratulations to contributors!

(Clip Art compliments of Bing.)

(Photos compliments of contributors.)

 

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

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

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

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

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

Feel free to “Like” my post.

Brain Injury Resources CTE & Football (chronic traumatic encephalopathy )

Brain Injury Resources . . . CTE & Football

presented

by

Donna O’Donnell Figurski

 

Brain th-2The regular season of the NFL (National Football League) begins this week. Although American football can be exciting, we in the brain-injury community are very aware of the havoc that both concussive and sub-concussive head impacts play not only on the brain health of the pros, but also on the brain health of college and high school players (1). We are especially sensitive to the high risk of the trusting and still-developing young players in Pop Warner leagues (2, 3).th

There has been a growing public awareness of the brain disease CTE (chronic traumatic encephalopathy), which can develop from hits to the ctehead and lead to “memory loss, confusion, impaired judgement, impulse control problems, aggression, depression and progressive dementia.” Some players have retired early (4, 5). Former players have sued or are suing the NFL (6). There is still a great deal of ignorance about CTE, but much research has been done and is being continued vigorously. This article tells us some basic facts that we should know.

Here is a brief outline from the article:

“Concussions in the NFL are more widespread than we thought

“An estimated 96 percent of deceased NFL players had CTE

“Researchers are working on a test for living players

“The NFL has donated $0 to this important new brain injury study”

I urge you to read the article for the details.

 

(Clip Art compliments of Bing.)

 

As I say after each post:

Feel free to leave a comment by clicking the blue words “Leave a Comment” below this post.

Please follow my blog. Click on “Follow Me Via eMail” on the right sidebar of your screen.anim0014-1_e0-1

If you like my blog, click the “Like” button under this post.

If you REALLY 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. That works for me too!

 

 

Caregivers SPEAK OUT! . . . Lynn Sandoval

Caregivers  SPEAK OUT!  Lynn Sandoval

presented by

Donna O’Donnell Figurski

 

Lynn Sandoval - Caregiver

Lynn Sandoval – Caregiver

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

Lynn Sandoval

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

Brady, Texas, USA

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

The brain-injury survivor is my husband. He was 39 years old when he had the brain injury. He was in an automobile accident. His car was hit twice, once head-on. The first car hit my husband’s car at ~95 mph. This hit spun my husband’s car around, and a second car, following the first car, hit my husband’s car in the rear at ~85 mph. My husband’s car was spun back around and finally came to a rest in the middle of the road.

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

I began care the day after my husband’s accident – when I was able to get to the hospital where he had been flown.

Were you the main caregiver?

In the beginning, my husband had hospital care in addition to mine.

Are you now?

I have been my husband’s only caregiver since he came home from the hospital.

How old were you when you began care?

I was 52.

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. I have been able to utilize FMLA (Family and Medical Leave Act) and sick leave. I have continued working whenever I am able to.

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

I have not had any help at home caring for my husband.

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

My support began in the hospital, and it continues to this day.

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

My husband was in a coma the first few days. While he was in a coma, I stayed by his bedside and talked to him. I touched him on the areas that weren’t bandaged to let him know I was there.

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)?

My husband had physical, speech, and occupational therapies in the hospital. They continued when we got home, once I got him set up for evaluations.

How long was the rehab?

k20116138My husband is still in physical therapy, and he recently started occupational therapy again. (He had “graduated” from occupational therapy about a year ago, but his neurologist requested that he do it again.)

Where were you when your survivor was getting therapy?

I was there with my husband during the beginning therapies, but after some time, he went to the therapies alone. Now we work together on exercises at home.

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

Now my husband is able to do things for himself, but I still have to get his medications together for him every day because he doesn’t remember if he’s taken them or not.diabetes_medications

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

Since I’ve become a caregiver, I have discovered that people will withdraw from situations because they don’t understand TBI (traumatic brain injury). It has its ups and downs, but we are now seeing more positive steps and are hopeful for the future. I have found that I am more depressed and feel alone because I am more involved with making sure everything is OK for my husband, but I am learning to take time for me.

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

Life before my husband’s TBI was a lot less stressful – being able to leave the house and not worry if he is OK. Now I keep my phone with me continuously so that, if he needs something, he can call and I’ll be there for him.

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

I am grateful that I still have my husband with me.

15. What do you like least about brain injury?

I dislike the frustration and confusion that my husband feels when he is trying to remember something and he can’t.

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

Yes – support-groups and reading – and more reading – on anything and everything I can find about TBI and about what can and can’t be beneficial – not only for him, but for us and our relationship.

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

Yes. I find I am hyper-aware of anything and everything my husband does in an effort to keep him safe. The relationships with his family and friends have become nonexistent. It hurts my husband so much to feel that no one cares about him.

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

Yes. We don’t go out much anymore because my husband doesn’t like being in large, noisy crowds and because it is difficult for him to stand or walk for extended periods of time.

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

My husband’s plans are to hopefully get approved for disability insurance and then to return to his job (that they are holding for him) part-time so that he can financially contribute to our family. My plans, if we are able to get some additional income instead of just mine (which has been our income for almost the last two years), would be to find a job to use my Master’s Degree. I just completed my degree program this past year in psychology. I’d like to work with other traumatic-brain-injury survivors and help advocate for them. Here in our small town, nothing is available.

Lynn Sandoval - Caregiver

Lynn Sandoval – Caregiver

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

I would say that, despite the difficulties in being a caregiver, caregiving can be rewarding – when together you see the progress your survivor is making because of his or her drive and determination and because of the support and love that you give him or her. It is tiring, it can be frustrating, and you may feel like screaming – these are all normal responses. The key is to remember to take a moment, to try to take care of yourself (this is the hardest thing), and to believe in each other.

 

(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 SPEAK OUT! Caregiver Interview Questionnaire for a copy of the questions and the release form.

(Clip Art compliments of Bing.)

 

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SPEAK OUT! . . . . . . . . . . . . . Faces of Brain Injury . . . . . . . . Lisa Wickenden, Survivor

SPEAK OUT! Faces of Brain Injury – Lisa Wickenden (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.

 

Lisa Wickenden (survivor)

Lisa Wickenden

Lisa Wickenden – Brain Injury Survivor

Three years ago, my life changed forever. I now have some challenges that no one can see, but I am reminded of them every day. Three years ago, I had my accident. I will forever have a TBI (traumatic brain injury). You cannot tell I have one by looking at me. Three years ago, relationships changed between friends and me. Some friends stuck around and are still a very, very big part of my life. Some friends faded away. gg66084897Three years ago, I had to start loving a new me. It’s still a struggle. But with all the support I have from family and friends, I know it’s possible.

 

Thank you Lisa Wickenden for sharing your story.

 

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(Photos compliments of contributor.)

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SPEAK OUT! NewsBit . . . . . . Repair of Neural Circuits in Stroke-damaged Mouse Brains

SPEAK OUT! NewsBit

Repair of Neural Circuits in Stroke-damaged Mouse Brains

presented by

Donna O’Donnell Figurski

 

 

newsboy-thBasic research on the repair of damaged mouse brains has again produced a potential breakthrough for human therapy. The research may accelerate our ability to repair damaged human brains. A trial study for using this therapy in humans is now being designed.

I’ve already written about the extraordinary promise of cell therapy in eliminating or greatly reducing the effects of brain damage. Much of this promise has to do with the discovery of stem cells, which have the stunning ability to develop into virtually any kind of cell. (The previous NewsBit, however, showed that scientists found a way to cause a common cell type to develop into functional neurons directly without going through a stem-cell stage.) In a study earlier this year, scientists showed that stem cells surgically implanted into damaged human brains reduced the severity of symptoms. But in that study, the scientists were surprised to find that the added stem cells themselves did not become new neurons and form new circuits, but they somehow revved up the brain’s natural ability to heal itself.animal-cell-hi

Now scientists at the University of Southern California (USC) with help from scientists at the National Institutes of Health (NIH) have found a way to activate the implanted stem cells so they develop into neurons and become part of new neural circuits. The direct involvement of the added stem cells resulted in enhanced repair and a much greater loss of symptoms. One NIH scientist said, “If the therapy works in humans, it could markedly accelerate the recovery of these patients.”

CellScientists had previously shown that an FDA (Food and Drug Administration)-approved reagent, the engineered protein 3K3A-APC, caused stem cells in culture to become neurons. The USC scientists wanted to see if 3K3A-APC would help the recovery of a brain-injured animal. The model used for brain damage was mice that were induced to have a stroke. The scientists implanted human stem cells and then treated the mice with 3K3A-APC or a placebo (mock-3K3A-APC). Mice that were treated with stem cells + 3K3A-APC did markedly better (some were almost normal) in tests of sensory perception and motor skills than did mice that were treated with stem cells + the placebo. Unlike the earlier study in which the added stem cells did not become neurons, these stem cells did become neurons if the mouse had been treated with 3K3A-APC.

ScientistThe human stem cells not only became neurons, but they also formed normal connections with mouse neurons. Because the implanted cells were human, the scientists were able to use a human-specific toxin to kill only the implanted cells (the mouse cells were resistant to the toxin). When scientists killed the new neurons, the mice lost the signs of recovery. The scientists concluded that 3K3A-APC caused the cells to develop into neurons that then formed functional neural circuits, ultimately leading to recovery.Brain Cell

USC physician-scientist Berislav Zlokovic, M.D., Ph.D., who directed the research, said, “When you give these mice 3K3A-APC, it works much better than stem cells alone. We showed that 3K3A-APC helps the cells convert into neurons and make structural and functional connections with the host’s nervous system.” (Full story)

 

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