TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘http://www.blogtalkradio.com/braininjuryradio’

Caregivers SPEAK OUT! . . . Theresa Friedle . . . . . . . (caregiver for her husband, Scott)

Caregivers SPEAK OUT!

Theresa Friedle (caregiver for her husband, Scott)

presented by

Donna O’Donnell Figurski

 

Theresa Friedle & Husband Scott IMG_20161112_102405896.jpg

 

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

Theresa Friedle

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

Tomahawk, Wisconsin, USA     theresaj4man@gmail.com

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

The survivor is my husband, Scott. At the time of the accident, Scott and I were engaged. We were married on June 3, 2017.

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

The accident happened two days before Scott’s 47th birthday.

What caused your survivor’s brain injury?

We were both working as truck drivers. Scott was picking up a load of plywood, which needed to be tarped. Something happened when he was on top of the load spreading out the tarp, and he fell anywhere from thirteen to nineteen feet (depending on if he was standing upright). He landed on his head on a concrete floor.

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

Scott’s injury happened on October 27, 2016. It took me ten and a half hours to get to him. I’ve been at his side ever since then.

Were you the main caregiver?

At first, the doctors and nurses were Scott’s caregivers. When he was discharged from rehab on December 22, I became his main caregiver.

Are you now?

Yes

How old were you when you began care?

I was 46 years old.

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

At home, I had a young adult daughter, who was expecting her first child, as well as my younger two children (older teenagers).

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

Yes. I was working for the same company as my (now) husband. I had a permit for a commercial driver’s license.truck4

If so, were you able to continue working?

No. However, I was told about a program through my state called “Family Care.” I now get paid to take care of my husband.

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

I learned a great deal from the doctors, nurses, and therapists who worked with Scott. I asked a LOT of questions. However, once Scott came home, other than my family pitching in with the chores – no. It’s my job.

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

Immediately – while Scott was in the neuro intensive care unit.

Scott’s family lives quite a ways away, so, to facilitate keeping them informed of his progress, I started a Facebook page about him. It turned out to be a wonderful support system.

9. Was your survivor in a coma?

Yes. Scott was in a medically induced coma. He had a craniotomy (to allow his brain room to swell), he was intubated, and he had two ports (one for meds and the other for nutrition).

If so, what did you do during that time?

I stayed by Scott’s side – talked to him and sang to him. I prayed. I kept his family informed, etc.

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)? Theresa Friedle & Husband Scott IMG_20170705_220110

Yes. Scott was transported to an inpatient rehab facility closer to home. They provided him with occupational, speech, and physical therapies.

How long was the rehab?

We were there for twenty-two days. Scott continues to see speech and physical therapists twice a week.

Where were you when your survivor was getting therapy?

I stayed with Scott in the rehab center.

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

When Scott was first home, he needed help with almost everything! He was still in a wheelchair, and he needed assistance toileting, dressing, bathing, and more. He now walks with a cane, needs occasional help toileting, can dress himself, can help cook meals, does simple crafts, etc. He can’t drive, so I also transport him to and from wherever he needs to go.

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

Our lives have changed dramatically. Everything we do revolves around Scott’s needs, doctor appointments, and outpatient physical and speech therapy appointments. We can no longer attend church services, and we cannot go anywhere where there will be loud, noisy crowds.

Is it better?

In some aspects, yes! I get to be home with my children, and I get to see my grandson more.ITheresa Friedle & Husband Scott & Grandkids MG_20170714_083217

Is it worse?

Yes. Scott is limited as to the things we can do, and we cannot drive a semi right now – if ever.

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

I miss going to church and driving a semi. The semi meant super-long days and hard work strapping and tarping loads. Driving it was often scary with how some people drive around us. But, it was something I’ve wanted to do since I was a teenager!

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

I love that I’m able to be home with my family! I love that I get to take care of Scott, who remains a super-loving wonderful man!

14. What do you like least about brain injury?

Scott’s constantly in pain.

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

AliveWhat has helped me most is being super-grateful that Scott’s ALIVE! I feel that, even if Scott stays how he is now, we still have a great deal to be thankful for.

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

Of course it has! Every aspect of our life has changed. We had to move our bedroom to the dining room because Scott cannot climb up and down the fifteen stairs to the upper level. Our laundry room is currently being remodeled so that Scott will have a shower. Now, I have to give him sponge baths in the kitchen. My children are happier because we’re home most of the time now. Through the Facebook page I created, I was able to develop a relationship with Scott’s family. They are so warm, loving, and welcoming.

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

We seldom eat at restaurants anymore. The busyness of them overwhelms Scott. We can’t go to church for the same reason. Social events are out. Friends can only stay for an hour or so, otherwise Scott’s exhausted. At this point, most of my social life is through Facebook. Honestly, we’re NOT dwelling on that!

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

We’ve discussed a few options, but none that is viable at this point. Until we know how permanent various parts of Scott’s injuries are, we really cannot plan much of anything. We make tentative plans for a week or two at a time, knowing that we can only do them IF Scott is having a good day that day.

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

Caregiver Tips -clipart-blackboard-helpful-tips-detailed-illustration-heplful-text-43676517This is a SUPER-hard job, as our emotions are involved!

Be gentle with yourself and super-patient with the PERSON you are caring for.

Join support-groups, even if you can’t physically attend a group. (I have found several through Facebook by entering “TBI support groups.” TBI=traumatic brain injury.)

Make sure you get the rest you need.

The hardest for me? ASK for help when you need it!

Celebrate each step forward. Little steps are STILL STEPS!

It’s going to be a very long road. Educate yourself about TBI.

Get involved with the therapists – you will get a better sense of what your loved one can and can’t do. (This helped me tremendously with selecting activities for Scott. I wanted to give him something that he CAN do – so he has a sense of ACCOMPLISHMENT. I praise his efforts, regardless of his success. I don’t live with Scott’s pain – but I can see how HARD various tasks are for him to do. When Scott is frustrated that he can’t do something that he used to do easily – Scott’s usually upset about household chores, etc. – I remind him that there is a HUGE difference between CAN’T and WON’T!)

Take notes when you go to various doctors. I have found that their records are often INCORRECT.

Life is very, very different than what we had envisioned, but “different” does NOT need to equate with “bad.”

Attitude is EVERYTHING!

It’s OK to cry.

It’s OK if all the chores aren’t completed every day. Your best IS good enough. Know that your best fluctuates every day – sometimes several times a day. One day you will be able to get everything that you want to do done! Woohoo! Another day, your best is simply getting out of bed!

YOU ARE NOT ALONE! 

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

Sometimes reading the answers to these questions sparks more questions. I would be happy to explain further.

 

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SPEAK OUT! . . . . . . . . . . . . . . . Faces of Brain Injury . . . . . . . . Ina M. Dutkiewicz (survivor)

SPEAK OUT! Faces of Brain Injury – Ina M. Dutkiewicz (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.

Ina M. Dutkiewicz (survivor)

Dutkiewicz, Ina M. Survivor 2 041316

Ina M. Dutkiewicz- Brain Injury Survivor

I had a near-fatal car accident on my way to work on February 3, 2010. I was immediately put into a coma from the violent crash, and I stayed in that coma for over four weeks. My pelvis was broken on both sides from my seat belt. When I woke up, I was classified as “not weight bearing” (wheelchair-bound). I slowly moved to a walker, and then to a cane. Now I can navigate without the cane if the weather is nice and not snowy or icy. I had to learn to walk again (I still have gait problems), as well as relearn to swallow and eat. (They started me out with ice cream! 🙂 ) I also had to do disability driving lessons before I could drive again.

It has been a long, scary road these past seven years. I was not willing to give up on myself, and I gave my all and then some to my recovery. I am hoping to someday return to work part-time.

Thank you Ina M. Dutkiewicz for sharing your story.

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TBI Tales . . . . . . . . . . . . . . . . . Caregivers, We Appreciate You

Caregiver’s We Appreciate You

by

Penny Byler

byler-penny-survivor

Penny Byler – Brain Injury Survivor

For the caregivers and families of us survivors, I know there is so much you can never understand about what we live with every day. But, please know that all you do is noticed and appreciated. Sometimes, we just don’t have the words to let you know that we understand that, on the day our life as we knew it completely ended, you also lost someone.

caregiver-supports-clipart-1Most of you never had the chance to mourn the loss of the loved one you knew because you were too busy helping this “new” person fit in where your dreams for your loved one left off. Although we don’t always show it, your kindness, love, support, and acceptance are noticed and appreciated. Thank you for never giving up on us. You help us know we can continue. We may not have the words to use when we need them, but you will see it in our eyes, by a touch of the hand, or when we smile.

You are a very important part of our recovery. You are noticed. You are appreciated.

 

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SPEAK OUT! Itty-Bitty GIANT Steps

SPEAK OUT! Itty-Bitty GIANT Steps

presented by

Donna O’Donnell Figurski

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

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

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

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

Daniel Bellmore - Brain Injury Survivor

Daniel Bellmore – Brain Injury Survivor

Daniel Bellmore (survivor) … I graduated from grad school with my Master’s Degree in mental health counseling, specializing in trauma and addictions.mental-health

David Smith (survivor) … In the past week, I’ve been working for a guy I met in town. I have been cleaning out his basement, 16358690_1201798153189065_1370881325_nthe entire house, etc. Yesterday, I began painting a bedroom, and I plan to finish this morning. I went to a TBI (traumatic brain injury) workshop – an art-therapy group. I also went to a “celebrate-recovery” group – I’ve been trying to help a friend.

clip-art-painting-314011I have difficulty staying focused on these accomplishments and others, since I woke out of a coma eight months ago. I’m glad that I can do these things.

YOU did it!

Congratulations to contributor!

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(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.

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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.

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(Photos compliments of contributor.)

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SPEAK OUT! Guest Blogger . . . GeorgeAnna Bell . . . . . . . . . . . . . How My Brain Injury Affected My Life

How My Brain Injury Affected My Life

by

GeorgeAnna L. Bell

presented

 by

Donna O’Donnell Figurski

 

Girl Blogger cartoon_picture_of_girl_writingI was diagnosed as being moody at nine years old. I still have that diagnosis to this very day: “mood disorder due to brain injury.” I also have anxiety and panic attacks. I still have today most of the same problems I had back then, just in an expanded manner.

GeorgeAnna Bell - Survivor

GeorgeAnna Bell – Survivor

I remember one thing that always frustrated me – Before my head injury, I was able to read, comprehend, and retain what I was reading. I remember having A to A+ grades and never getting into trouble. But, as soon as I had my head injury, I remember being hit a lot with a ruler by the nuns, being called “demon child,” not being able to read out loud, and having issue after issue trying to remember what we just learned or read five minutes ago and being told that I was lazy. (Oh, that one always got my goat.) I could not keep quiet or shut my mouth for more than five seconds, and I would speak out of turn. I could not sit still in my seat, and I was constantly moving around and around. These are some of the things I personally remember.

Kids_smiling_girl_cartwheelI know my parents wondered why I acted out, and they took me to multiple specialists during my youth. I was diagnosed with optic nerve damage, but no other problems resulting from my head injury were identified. Each doctor gave my parents the same answer: “There is no logical explanation as to why she is doing this now when she did not do it before the head injury.

I was extremely impulsive and still am to this day. In addition to the moodiness, this has been one of the hardest things for me to overcome. I experience emotions very quickly and intensely. As a child and into my teen years, I was very moody and got aggravated very quickly over the littlest things. I always felt anxious without exactly knowing why most of the time. It still happens to me to this very day. I will have an anxiety/panic attack, and I cannot explain why it happened. Recently, I went to a friend’s house, and I had to leave soon after I got there because I started to have an anxiety attack. I get anxious easily still today because I am so afraid people are going to make fun of me and tease me because I am different. I do not tend to keep friends very long because they tend to find something that is strange or I say something weird and they run from me.

I have absolutely no tolerance for change. I have no patience when it comes to waiting – I have to have everything NOW, NOW, NOW. I am always told I have indiscreet ways for making my feelings known to others. So many people take my statements out of context. I feel that I am acting appropriately, but others do not see me that way. When I change my way of saying something or going about something, I am told I am coming off as hostile or aggressive. I do not see it that way, nor do I mean it in that way either. I try to explain my head injury to others, but they tell me to shut up and act normal and stop giving excuses. Yet, it is not an excuse; it is the truth.gg66852714

As a child, as a teenager, and even in my adult years, I lacked awareness of my own personal deficits. It was only about five years ago that I started to realize the things I do that cause these issues, and I personally have tried to change them.

I would verbally lash out, cry, become depressed, and literally throw temper tantrums. This went on into my early 30s. I realized that, if I do not change, I will never have anyone in my life because all I do is find a way to push everyone out of my life. It wasn’t until maybe a year ago that I started to try to change things on my own.

I have also tried to seek professional help, even going as far as intentionally getting myself diagnosed as being “severely mentally ill” just to get the help. But, nothing worked. Actually, getting that diagnosis set me back years.

I had NO assistance from the mental health system. They were actually making my problems worse. Now I try to address the fact that there is an issue, and I doggedly try to understand what the physical, emotional, and psychological effects are upon my daily day. I try to rectify those effects that I deem as a hindrance to my social well-being by forcing myself to change the way I interact with others. I started by intentionally going to bars, not to drink, but to interact with others so I could watch how people reacted to certain behaviors. Honestly, this was hard and long. I lost people from my life, but those people were not the people I truly wanted in my life anyway.family-clip-art

I have a problem keeping people in my life as a result of my inability to function properly in certain social situations. The majority of family and/or friends that choose to maintain their relationship with me either ignore or downplay any behaviors that I portray. Only a select few recognize and respond well when my behaviors are considered outside social normality. When people start to see the social abnormalities in my personality, most either ask what is wrong with me, why I am acting like a crazy person, or just never speak to me again by cutting me out of their lives. (Almost always, they cut me out little by little.)

sad-teenage-girl-clipart-teen_girlDuring my teenage years and into my 20s and even 30s, I had depression on and off. It got better after I had a hysterectomy. When my behaviors started to level out a lot, I was able to control myself better and move past other issues by actually learning not to do this or that.

Amber GeorgeAnna Bell's Service Dog

GeorgeAnna Bell’s Service Dog, Amber

Within the last year, I have found one of the best outlets to cope with the changes in my behavior. I now fall back on crocheting. I make things for others who are in need of certain things more than I. For years, I would fall back a lot on my dogs and my boyfriend. Honestly, one of the dogs – my service dog, Amber – helped me break free from my isolation. The attention that people placed on her made me break free of the isolation I had restricted myself to. I interacted with people just by talking. I learned how to cope with my anxiety and my expression around other people.

 

Thank you, GeorgeAnna Bell.

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

(Clip Art compliments of Bing.)

(Photos compliments of GeorgeAnna Bell.)

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

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

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

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So, Whaddya Think? . . . My Opinion: Sports Benefits Outweigh the Risks

So, Whaddya Think?

My Opinion: Sports Benefits Outweigh the Risks

by

 Charles Ross

presented

by

Donna O’Donnell Figurski

So Whaddya Think Brain th-4I was eighteen when I had my traumatic brain injury (TBI) in a car accident in 1985. I was brought back to life once. I was in a coma for fifty days. I was in a wheelchair for one and a half years. I have memory problems. My body drew up into a fetal position. It took seven years of painful surgery and therapy and close to thirty procedures to straighten my legs, feet, arms, and hands. Thirty years later, my claw-shaped right hand looks like it has rheumatoid arthritis, but I use it. I write with that hand and walk with a cane in it. Three years after my accident, I went back to college. It took three years of difficult work to get my first Associate Degree and two years for a second in Mechanical Drafting, AutoCAD. I worked fifteen difficult years doing AutoCAD. Not one day since my accident has been easy for me. I am proud of what I accomplished, and I hope my story will be an inspiration to others.

Ross Jr., Charles Survivor 112415 copy

Charles Ross Jr. TBI Survivor

I know personally how tragic it is if a person gets hurt or killed accidentally, but that’s life. I don’t want to seem like life does not matter to me – because it does. (My life now is precious to me. I cherish each moment I have with family or friends. Hundreds, maybe thousands, of people, whom I never would have met otherwise, have blessed my life.) I am not heartless; I am very compassionate. I cry when I hear a tragic story of any kind. I know what life is. I know what death is. And I know what pain and suffering are.

I played three years of high-school football. Many guys were much bigger than I was, and I was fortunate not to get hurt. It was my third year of driving when I had my accident. Throughout my recovery, I looked back at the grueling football practices, and they football-player-tackling-cartoon-football-playersinspired me to go forward. What a sport does is teach sportsmanship, pride, respect, and loyalty, and it inspires one to do better.

Should I never ride in a car or even drive again because somebody has gotten hurt in a car accident? A baseball player may get hit in the head by a pitch, but now players have helmets to protect them. (There isn’t protective headwear in basketball, volleyball, tennis, or soccer, but maybe there should be.) Thousands of people end up in Emergency football_-_helmet_5Rooms or even in morgues because they fall while walking and hit their head. Should every man, woman, and child wear a helmet simply to walk? It seems just as foolish to end all athletics.

 

So, Whaddya Think?

Let’s get a dialogue going. Post your comments in the Comment Section. Directions are below.

So . . . what do you think? Is there something you are passionate about in this Brain Injury (BI) world? Do you want to be heard? Your opinion matters! You can SPEAK OUT! on “So Whaddya Think?”

Simply send me your opinion, and I will format it for publication. Posts may be short, but please send no more than 500 words. Send to Neelyf@aol.com

I hope to HEAR from you soon.

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Tag Cloud

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