TBI – Survivors, Caregivers, Family, and Friends

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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Survivors SPEAK OUT!  Mark Moore

presented by

Donna O’Donnell Figurski

moore-author-photo

Mark Moore – Bran Injury Survivor & Author

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

Mark Moore

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

McLean, Virginia, USA     mark@mbmoorefoundation.org

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

2007   At age 46

4. How did your brain injury occur?

I had two strokes.

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

I was coaching my son’s baseball practice, and I began to lose my balance.

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

I had a craniectomy (brain surgery in which a piece of the skull is removed, but, unlike a craniotomy, is not returned to its original location) to relieve the pressure on my brain.

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

Yes. I was in a coma for four 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)? How long were you in rehab?

Yes. I had physical therapy, occupational therapy, and speech therapy as an inpatient for two weeks and then as an outpatient for two months.

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

Initially I had significant diminished use of my left side and loss of peripheral vision in my left eye. I couldn’t walk or speak.

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

Having a stroke was the worst day AND the best day of my life. It was the worst day because it was scary and it was one of the first times I realized that I had no control over the outcome. It was scary for my wife and my family. When I found out that I had basically been “asleep” for nearly six weeks, I was scared all over again. I had to face the fact that I might not walk, talk, or think like Mark Moore ever again. In fact, I had to recognize that the “old” me might actually be gone. At that moment, it felt like the worst thing I could imagine.

Mark & Brenda Moore with Obamas.jpg

Mark & Brenda Moore with President & Mrs. Obama

As I struggled with those concerns though, I remembered my mother’s words – words I had forgotten, words she had spoken to me during her own health crisis. She said, “Mark, God will never give you more than you are able to handle.” Those words impacted me and turned me around. I was slowly able to stop thinking just of myself. I started thinking about God and what He could do and would do with my life now. He could pick up the pieces of this broken version of me and heal me – create in me the person he meant for me to be. That thought began to work in me, and though I knew it wouldn’t be easy, I also knew that, with God’s help, I could let go of the old Mark and become a new man.

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

Riding rollercoastersroller-coaster-thought-of-the-day-jewels-art-creation-clip-art

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

I enjoy my relationship to God.

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

I dislike the constant scanning to drive

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

Having a stroke meant I had to learn to surrender. I had to face the fact that my abilities as a “fix-it guy” were not going to come to the rescue. I had to do something that was hard for me to do. I had to be willing to give up my illusions of who Mark Moore was and hold on for dear life to who God is. That’s surrender! That’s where everything you thought you knew comes to a halt and God finally has enough of your attention to help you become what He planned all along.

When I first looked at what was going to be required of me in the recovery process, I did not want to do it. I thought it would simply be easier if God just shut me down, packed me up, and sent me back to His house. But, He didn’t do that! He kept me in the hospital for several weeks and then sent me back to my house. He showed me that recovery meant I had to totally trust Him and my wife, Brenda, and the therapists, who would bring me back to good health.

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Mark Moore – Brain Injury Survivor – 5K Race

Starting therapy looks daunting. It is daunting, and it’s even frightening! Everything in me resented that I had to be there and that I had to learn all over again things I’d known all my life. If you’re facing therapy and recovery now, all I can tell you is to do what you’re told to do. Make the effort. Try harder than you’ve ever tried in your life, and lean on the people who love you. Open your heart and mind to all that can still be possible for you. That’s what surrender requires. That’s what trusting God is all about. You’ll be in recovery for a long time (maybe the rest of your life), but you’ll be in good hands in the process.

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

One day (May 12, 2007), I had a stroke, which was followed by another one. I was fine one minute and fighting for my life the next. In the process of recovering from those strokes, I discovered something I had not fully realized before. God had a plan for my life. He had a purpose for me, and I was not on the path He preferred. In one day, my life changed, and my purpose changed with it. To be honest, when I discovered God wanted something more from me, I was relieved. Clearly, there was more I could do, and it didn’t always revolve around the work I had carved out for myself. I was relieved to know that I could step back from the life I designed and be far more comfortable in the one He designed.

basketball-clipart17My friends were amazed when I did not show any interest in simply going back to work. They thought it was strange that I did not want to play basketball, a game I had loved playing all my life. What I did want to do was to please God. What energized my spirit and resonated with my soul was to do the things God wanted – to fulfill His purposes in me.

What a difference a day makes! What joy it is to my heart that God was with me through the strokes and is with me now to guide me into being the Mark Moore He always knew I could be. What a joy it is to live more intentionally and more fully awake to the places He would have me go.

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

Not really

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

I don’t have or need a caregiver.

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

When God had my attention as I lay in a hospital bed, He asked me a new question. Whose job is it to help others? Whose job is it to make a difference? Whose job is it to spread the gospel? The answer was the same in every case. It was MY job! God had blessed my work and made it possible for me to bless others. He took me out of the race in which I’d driven laps for twenty years and said, “I have something new for you. I want you to slow down and hear what I have to say.” I stopped then and listened.

God didn’t “give me a stroke.” He used the stroke to give me a new purpose. He used the situation to help me hear His voice more clearly and to understand the job He had in mind. Whose job is it … to do good, to help others, to lend a hand? It’s mine, and it’s yours! Let’s use whatever resources we have been blessed with to help those around us. It will fulfill our life-purpose like nothing else can do.

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.

It was interesting to me after my stroke experience to discover that I did not want to be “naked” in front of my family – in front of the people who knew me the best. Like Adam and Eve, I wanted to hide so they would not discover my fear and sense my weakness.

As I looked back at my initial reactions to my strokes, I realized we can’t hide from the people who know us well and love us any more than we can hide from God.

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Mark & Brenda Moore

My wife did not want me to hide from her. She was ready to help me – ready to stand beside me and offer me her strength. My friends were like that too. Caregivers and hospital personnel were set to help me, but I had to be willing to be “naked.” I had to be willing to let them see my weaknesses and my vulnerability. I was not the person I had been; I needed their strength.

Another thing that was extremely helpful during my stroke recovery was that I began to regularly put on my headphones to listen to gospel music. The effort to re-establish my fine-motor skills was sometimes grueling, and I wasn’t always sure I could do it. Gospel music comforted me and helped me get through the ordeal. It reminded me over and over again of what Jesus did to give me life, to lift me up, and to restore my soul. It also reminded me that there was nothing I was going through that Jesus did not experience. He paid the price so that I could be restored eternally, spiritually, and physically to this day.

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

One thing I tell everybody is that you can’t recover from a stroke or any debilitating illness without the help of your family, your friends, and your faith. It can take days, weeks, or months to see any real change in the things you are able to do physically. That means that mentally and emotionally you have to lean on the things that boost your morale and make a difference in your attitude. When it comes to the kind of help your family, friends, and faith can give in your recovery, it all depends on YOU!

I say it depends on you because you are the only one who can let others in to help make a difference. Your spouse can come to your aid every day and cheer you on and encourage you, but it won’t do any good unless you’re willing to receive it. I can admit that there were times when I didn’t really let my wife, Brenda, in. I was scared, and I didn’t want her to know it. I didn’t want to have to tell her that I didn’t think I could do what it took to recover. She had known me as a guy who was a go-getter – someone who rose to the occasion to get things done. After the stroke, though, I didn’t always believe that I had that same courage.

Friends stood beside me as well and helped me get the message that a lot of people cared and were rooting for me. They wanted me to get better and to become the old Mark again.

 

(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! Survivors Interview Questionnaire for a copy of the questions and the release form.

(Clip Art compliments of Bing.)

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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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!

(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.

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

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Survivors SPEAK OUT!  Jordan Emerson

presented by

Donna O’Donnell Figurski

jordan-emerson-2

Jordan Emerson – Brain Injury Survivor – Race Car Driver

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

Jordan Emerson

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

Windham, Maine, USA

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

I had my brain injury at 13 years young.

4. How did your brain injury occur?dan Emerson

Jordan Emerson - Brain Injury Survivor - Race Car Driver

Jordan Emerson – Brain Injury Survivor – Race Car Driver

I was driving a fully-safety-equipped racecar.

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

When I was unconscious

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

I was given a trach. I had emergency procedures for a cracked left hip, brain stem, seizures, a crushed left arm, paralyzed vocal chords, and paralyzed stomach.

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

Jordan Emerson - Brain Injury Survivor

Jordan Emerson – Brain Injury Survivor

Yes. Almost 3 months

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 have occupational and physical therapies as an outpatient. I was also helped by a speech-language pathologist.

How long were you in rehab?

I’m still attending OT and PT as an outpatient.

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

I still have awful trouble going to the bathroom. Being in crowded areas makes me tired. (It’s “overstimulation,” but instead of overstimulation, it feels like a “draining of my energy.”)

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

My life is neither better nor worse. It’s just different.

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

I miss being able to run around outside with my dogs.

th-112. What do you enjoy most in your post-brain-injury life?

I like that everybody seems to offer to help more often.

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

I dislike that I’ll be thinking so hard about something, and then, *poof* it’s gone.

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

Talking with other survivors has helped.

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

Before I developed a filter, I said things to friends, and over time, those friends disappeared.

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

Yes. I have lost friends.friends

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

My mom is my main caregiver. I’m thankful for her every day.

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

I plan to be driving, living in my own apartment, married, etc.

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.

Hard work really does pay off.

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

Jordan Emerson and Mom & Dad

Jordan Emerson – Brain Injury Survivor and Mom & Dad

I owe a lot of my journey to my loving parents – I couldn’t have done this without them. I ♡ them!
Please feel free to reach out to me (#Believe). I enjoy helping whenever I am able. Believe!

 

 

 

(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! Survivors Interview Questionnaire for a copy of the questions and the release form.

(Clip Art compliments of Bing.)

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

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

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

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

Feel free to “Like” my post.

SPEAK OUT! Itty-Bitty GIANT Steps

presented by

Donna O’Donnell Figurski

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

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

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

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

 

Here is this week’s Itty-Bitty GIANT Step

johnson-richard-la5-seqbctqtwxpuelqm7w3zpspra73-btysv2tzfrmhjlfsj8cadfvj1wnfejetg2tstj4rfqdvol9omi_160cym__3h82mwgki2qevhzyz8zlyhqad7iswyoqj_li8nobqrokqqzvt95fkknyw4ond7a0fskhymnexzhzebcwpbattvzu5li

Ric Johnson – Brain Injury Survivor

Richard Johnson (survivor) … With two new grandsons, my wife and I decided we needed a baby crib in our house. So, we went to a store, bought one, drove it home, and then had to put it together. It should have been easy, but not so much after a traumatic brain injury.crib

First, it was hard to focus in the store – too much noise and too many lights. Then, having short-term memory issues and only two hands, I took four hours to put it together.

YOU did it!

Congratulations to contributor!

(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.

Caregivers  SPEAK OUT!  Lori Strauss Heckman

(caregiver for her son, Bartholomew Wayne Nathaniel),

presented by

Donna O’Donnell Figurski

lori-strauss-heckman-caregiver-012017Three years ago, our lives were turned upside down when my then 21-year-old son had his accident. It has been a long road with many hurdles to overcome, but I am so proud of him. He is my hero and my greatest blessing. And, proof to never give up. We were told that he would probably not make it that night. We were also informed that, if he did, he would not have any quality of life. But, he proved everyone wrong! Many prayers were prayed and many tears were shed, and my son is still with us – and doing very well. The first and second photos are of my son after the accident; the third is him wearing a helmet in recovery; and the fourth photo is of him with his car. (Yes, my son is driving, and his seizures are under control.)

Meet Bartholomew Wayne Nathaniel

bartholomew-wayne-nathaniel-survivor-hospitalbartholomew-wayne-nathaniel-survivor-012017

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bartholmew-wayne-nathaniel-survivor-car

(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.)

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

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

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

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

Feel free to “Like” my post.

SPEAK OUT! Itty-Bitty GIANT Steps

presented by

Donna O’Donnell Figurski

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

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

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

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

 

Here is this week’s Itty-Bitty GIANT Step

david-june-14

David Figurski, PhD – Brain Injury Survivor

David Figurski (survivor) … Because my speech has been affected by partly paralyzed vocal chords and tongue, I was worried that my comments at my father’s funeral Mass would not be understood. On top of that, I was beginning to lose my voice from speaking with so many people the day before at the funeral parlor. But, with Donna’s support as she balanced me, I walked to the podium, and I gave my comments. For ten minutes, I gave them – careful to speak slowly and enunciate every sound.

david-at-church-podium

David Figurski at Podium

Several people came up to me afterward and said that they had no problem understanding me. It’s something I had wanted to do to honor my 95-year-old father. I was happy and proud that I did.

hank-figurski

Hank Figurski 1921 – 2017

 

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.

Twelve Years, But Who’s Counting?

by

Donna O’Donnell Figurski

1242232191169820850212_white,_green_rounded_rectangle.svg.med.pngTwelve years! Twelve years ago today, I came as close as a breath to losing my husband and best friend, David. While exercising (a thing he did every day to stay in shape), David did thirteen chin-ups, one more than he had done every other day. That was the proverbial “straw that broke the camel’s back,” or in David’s case, the “chin-up that caused his subarachnoid hemorrhage.” That day, as I rode with him in the ambulance to the hospital, I never realized what lay ahead for us. I never dreamed that this blip would be life-altering. I thought we’d be home by the end of the day, carrying on with life as usual. I was wrong!

david-jareds-wedding-060513

David H. Figurski, Ph.D. – Brain Injury Survivor

David remained in the hospital in the Neuro-Intensive Care Unit (NICU) and the step-down unit at Columbia Presbyterian Hospital (now New York Presbyterian Hospital) for three weeks. While he was there, he was treated to two more brain surgeries – one for an aneurysm and the other for an arterial venous malformation (AVM). He then became a guest at a local rehab hospital for another two months, until insurance wrongly said he was fine to go home.th-1

I am grateful that David is still with me. He wasn’t expected to be. Each surgeon gave me little hope that he would survive any of his surgeries. I’m glad that David proved them all wrong. I’m glad that we have had twelve more years together, and I hope to spend many more with this man whom I have loved since I was sixteen years old.

animated-book

Hopefully, in the sometime future, you will be able to read David’s whole story in my book-in-manuscript, titled “Prisoners Without Bars: A Caregiver’s Tale.”

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 intact it 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

To Life – La Chaim!

presented by

Donna O’Donnell Figurski

And to death … well, my father-in-law, Hank (Henry) Figurski, did it with grace and dignity.

On January 5th, we said our final farewell to Hank. It was bittersweet. He lived a very long, fulfilled life. He lived surrounded by the love of his family – his sons, his grandchildren and great grandchildren and his brothers and their families. He lived with the dream of someday being reunited with the love of his life, Lydia, in what he believed was the afterlife. We will miss the man that we loved, but his memory will live on in our hearts and our minds.

Hank Figurski La Chaim 111217.png

Fork in the Road copy“Another Fork in the Road”

This category is an extension of my radio show, “Another Fork in the Road,” which airs at 5:30 pm (Pacific Time) on the 1st and 3rd Sundays of each month on the Brain Injury Radio Network. (See the “On The Air Show Menu” category for a list – with links – of all my shows, which are archived and thus always available.)

On the 1st Sunday of each month, I host a panel of brain injury survivors, caregivers, and/or professionals in the field. On these shows, my panelists and I examine topics pertaining to brain injury.

On the 3rd Sunday of each month, I host guests – brain-injury survivors, caregivers, or professionals in the field.

Since I spend countless hours in preparation for each show, I decided to share the knowledge that I gather with my readers.

TO Support-group … or NOT TO Support-group

by

Donna O’Donnell Figurski

There are support-groups for almost everything. Probably the most well-known group is “AA” (Alcoholics Anonymous). There are groups for eating disorders, domestic abuse, mental health, physical health problems, such as cancer and diabetes, groups to enhance relationships, and many others. If there is donate-to-us-www-frankiejohn-com-uexc3u-cliparta problem, there is probably a group for folks to join. Groups for supporting brain-injury survivors and their caregivers, family members, and friends are cropping up everywhere. This is relatively new, since little was known about the seriousness of brain injury until rather recently. When the troops began to come home from the Iraq war with serious brain injuries, people started to notice. Then when the deaths and illnesses of so many former NFL players came to light – starting with Dr. Omalu’s finding of chronic traumatic encephalopathy (CTE) in the brain of Pittsburgh Steeler Mike Webster during an autopsy in 2002 – more people took notice.

omalu

Bennet Omalu, M.D, M.B.A., MPH, CPE, DABP-AP, CP, FP, N

Two things you might consider when searching for a support-group are location (Is it within reach? Will you easily be able to get there?) and size (Is it large enough or small enough for you? Too large – you may get lost and not have any of your needs met. Too small – there may not be enough information to share, but it may be easier to connect with folks of the same interest). You will need to comfort-fit your support-group to your needs. If you are unable to join an in-person support-group, don’t fret. There are many support-groups on social media.

My husband’s brain injury happened in January of 2005. As his caregiver, I went it alone … for years and years. I wasn’t aware of the multitude of people who had a brain injury. I was ignorant that there were millions of caregivers like me, and I certainly never realized that there were support-groups for caregivers. It wasn’t until three years ago that I stumbled onto the support-groups on Facebook. I joined many of them, and I have made many good friends there – both virtual (some from across the world) and the ones nearer, some of whom I met in person to share a coffee or a lunch together.

support-group-clip-art-412049There are virtual groups for caregivers. (One is just for spouses or partners of survivors.) There are groups for both survivors and caregivers together. There are groups for traumatic brain injury survivors; for acquired brain injury survivors; or for survivors with ataxia, multiple sclerosis, or stroke. Some of the benefits of support-groups are that folks are more apt to understand what you are going through. Because they share similar issues, they are able to offer emotional support, suggest advice, or provide tips that worked for them. There is a veritable smorgasbord of ideas out there in cyberworld. If you are looking for an online group to hold your hand, hear you vent, or answer your questions, I promise you will find it.

david-jareds-wedding-060513

David H. Figurski, Ph.D. – Brain Injury Survivor

Support-groups are usually, but not always, beneficial. When my husband, David, had his brain injury in 2005, I had little knowledge of support-groups. We went to a local group a few times, but David didn’t find it helpful. In fact, for him, so early in his journey, it was not at all beneficial. He found it difficult to identify with the other survivors of brain injury. Though David was in poor shape physically and was unable to do much for himself, he still felt that his mental health condition was better than that of the others in the group. Being in the group brought David down and left him with little hope. He asked that we not go back, and I agreed. But, unlike this example, many people rely on support-groups.

Because our earth supports more than twenty-four different time zones, there is always someone available to talk with 24/7. That is one of the major advantages of belonging to support-groups on social media, and I am so grateful that I stumbled onto them. I finally knew that I and David weren’t alone. Just in the United States, there are more than five million people living with brain injury. Can you imagine the number if you counted up all of the survivors of brain injury around the world? Astronomical!

giphyIf you are not yet convinced that support-groups can be helpful for you, here are a few more reasons. They empower you. They put you in the driver’s seat to take control of what is happening in your life by helping you to find answers. You immediately become a member of a like-minded group of people who accept you, understand you, and is not judgmental. So, if you feel a support-group would be beneficial to you, by all means find one. They can be wonderful!

So, how do you find a support-group to comfort-fit your needs? If you choose to be a part of an in-person support-group, ask your primary-care provider, your neurologist, a social worker, or your church minister to recommend any groups near you. You may also contact become_a_facebook_fanthe Brain Injury Association of America (BIAUSA.org) and locate your local chapter for your state to find a support-group near you. But, if you prefer the comfort of your home (as I do) and you have nimble fingers, open up your computer and find a Facebook group. There are more than thirty to join. I know … because I am a member of at least thirty. I only wish that I had known about the social media support-groups when David had his brain injury over eleven years ago. With a support-group, you are never alone.

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