TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘braininjuryradio.com’

TBI Tales: Inspiration . . . . . . . . by Bonni Villarreal (caregiver)

Inspiration

by

Bonni Villarreal (caregiver)

presented by

Donna O’Donnell Figurski

Bonni Villarreal – Caregiver

March 21, 2012, is a day that changed my life forever. It started off like any average day. I got up and went to work. Mike was asleep when I left. I called him around 8:30 that morning to let him know I wouldn’t be at my desk, in case he tried to call me. He sounded fine. Then, just by chance, I happened to be at my desk at 10 am when my phone rang. It was Mike … telling me he was having a stroke.

By the time I got to the house, the ambulance was there. Mike was awake and reaching for me. I didn’t think it was too serious because Mike was alert and talking. But, by the time we got to the hospital, that had changed. The doctor informed me that Mike had a huge blood clot near his cerebellum, and he had to be life-flighted to another hospital because he was too critical to stay at the one he was at.


I had to sign papers for life-saving brain surgery. Mike was in a coma for ten days. We didn’t know if he would wake up, and, if he did, what condition he would be in. When he “woke up,” Mike wasn’t anything like the man I married. He stayed in the hospital for another month, and then he was transferred to a nursing home.

Those days were some of the darkest in my life. They treated Mike as if he were a hopeless case. I wonder what would’ve happened to him if I hadn’t been around.

Mike Villarreal – TBI Survivor

He was tube-fed, couldn’t speak (he wrote instead), and couldn’t walk. He was totally helpless. Plus, he was battling infection after infection. I didn’t think things would ever return to normal.

Fast forward to January 2017 – almost five years post stroke. Mike passed his barium swallow test, and he is having his G-tube removed! He is walking almost unassisted! He is talking! I told Mike, “You are an inspiration. You give hope to people who have lost it, you have renewed hope for people who are about to give up, and you keep hope alive for people who are just starting this long journey.”

Mike wants everyone to know – DON’T EVER, EVER, EVER GIVE UP. No matter if it’s been five, ten, or fifteen years. Keep hope alive! Mike did, and look how far he has come!

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Survivors SPEAK OUT! . . . . . . Jamie Crane-Mauzy

Survivors SPEAK OUT! Jamie Crane-Mauzy

presented

by

Donna O’Donnell Figurski

 

 

#1 Jamie 5

Jamie Crane-Mauzy – Brain Injury Survivor & Professional Skier

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

Jamie Crane-Mauzy

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

Park City, Utah, USA

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

I had a traumatic brain injury (TBI) on April 11, 2015. I was 22 years old.

4. How did your brain injury occur?

I was competing at the world-tour finals in Whistler, Canada. I got 4th first run, and I wanted to upgrade my off-axis backflip to an off-axis double backflip. I under-rotated, caught the edge of my ski, and whiplashed my head into the snow. My brain started bleeding in eight spots. I hurt my right brainstem, so my right side was paralyzed. I started convulsing and slipped into a coma.

#4 Jamie Crane-Mauzy In Air

Jamie Crane-Mauzy – Brain Injury Survivor & Professional Skier

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

Immediately. I started convulsing on the snow. First Response came, and it was obvious at the moment that I was in serious trouble. I was convulsing in a way that usually only happens on the verge of death. After I left in the helicopter, my First Response wrote up my fatality report. They though I had a “one in a miracle” chance of surviving. For the first few days, the doctors didn’t know if I was going to survive. After it became clear I was going to survive, they weren’t sure if I would ever walk or drive. They didn’t think I would be able to go back to sporting activities, accomplish anything, or live a normal life.

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

I became the first person in all of North America (I was in Canada at the time) to be treated with an oxygen-analyzing brain bolt. I didn’t have to have any of my skull removed because I had extra space for my brain to swell into. (See, I am a certified airhead. ;)) I didn’t break any bones or tear any ligaments.

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

I was in a coma for around ten days. I was aware for seconds, when I was flying from Vancouver to Salt Lake City, but I then slipped back into the coma.

#3 Jamie 7

Jamie Crane-Mauzy – Brain Injury Survivor & Professional Skier

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

I did two weeks of inpatient therapy. Then I left the hospital and did two months of five-days-a-week therapy. Each day, I did three hours of therapy – one hour each of occupational therapy, physical therapy, and speech therapy. Then I always say I did about five hours of my mom’s therapy. I had to relearn Rosetta Stone in English; I had to use a hand-strengthener; and I had to do Algebra 1, read, write, and do Lumosity. And then, outside of my regular physical therapy, I would do light workouts with a physical trainer three times a week. I would also do modest activities, like go for a one-quarter-mile hike.

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

I have no permanent damage. The emotional damage took the longest to heal.

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

I am more aware about life. I used to be a “park rat,” just interested in skiing. I never really thought past a year, so I was very focused just on the next year of skiing. Now I am aware of my future. I feel it’s important to relax and have fun and not want to make my life in one year. I want to develop a career as a motivational speaker. I now know what I am looking for out of life, and I believe it’s moving positively. I have an incredible story to tell, so I am doing media conventions and television interviews. For the first year, I did lots of healing. Now I am sharing my story. I believe sometimes my  TBI was the best thing that ever happened to me because now I have a way to share a motivational story.

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

I honestly don’t miss much. I can ski, flip, and spin again. I had a lot of emotional issues, but I worked through them all. So now I am just a 23-year-old girl. I don’t know how my life will turn out, but I am accomplishing as many goals as I can.

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

I enjoy several things: the opportunities presented to me to be able to showcase an inspiring motivational story, how happy relearning everything has made me, and how much I have grown up and evolved in one year.

13. What do you like least about your brain injury?sport-graphics-skiing-020331

I dislike never being able to compete and go to Dew Tour and X-Games again. A TBI is not like tearing your knee, which sucks, but has an eight-month recovery. It’s a fact that TBI changes your life. You can make it as beneficial of a change as you can. But it did change, and there is no going back to being the exact person you were before the accident.

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

A lot. My family has supported and helped me in a way I will owe them for life. The ski industry has kept me relevant. (For example, I was a guest athlete-announcer at the winter Dew Tour.) Since my accident, everyone has wanted to help me, which has been crazy. Now I am going to the University at Westminster College. I am working at the National Ability Center and setting goals and having accomplishments. Doing flips and spins on the water ramps again has made me so happy. The hardest part for me is dealing with all the emotions – knowing that, once you hit your head, you physically change your emotions and knowing that I was a competitive freestyle skier whose life was competing on the world tour. It’s important to remember every time it’s hard that there are still doors – grab the handles and walk through. I am only 23 and still have an incredible life to live! No one knows where this life will go. (Maybe someone reading this will recommend me to those in charge of their corporate special events who want to hire a public speaker.)

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

My home life and my family have been fabulous. It has changed every week, but it is solid now and has been good for a while. What hit me the most was boys. I usually don’t fall for a boy very easily, but all of a sudden I became obsessed and needy. I wanted someone to save me. I wanted to find the man of my dreams, have him save me, and get married in the future, but fall in love right now. Then I realized that’s not me. I have opportunities, standards, and my own life. I never before wanted to find the one, and I don’t now. I have so much going in my life. I am back to being busy, and it will all work out. When I’m not looking in the future, I might find someone I want to be with. Now I’m my own best friend, and I need no one else to save me.

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

#2 Jamie 6.jpg

Jamie Crane-Mauzy – Brain Injury Survivor & Professional Skier

Going back to what I wrote before, I fell for a lot of boys I was friends with. Because everyone was so happy I was alive, no one told me “no.” They would say, “Yes, let’s hang out” and then blow me off. Now I won’t even approach them to give them the time of day. If someone generally wants to spend time with me, they have to reach out and contact me. If someone doesn’t say what’s on his mind, we can never have a genuine friendship. Many were egotistical, but it made them feel better to always agree with me because I was alive and had almost died. People are beginning to treat me normally again. I really missed how everyone would be overly nice and how no one would tease me, make jokes, or “pull my leg.” I never realized I would miss it so.

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

My main caregiver is my mom. She doesn’t have to take care of me now, but, yes, I do understand how I will owe her for the rest of my life. My mom is the reason I fully recovered. Back when I did three hours of outpatient therapy every weekday, I did five hours of my mom’s therapy. She made me learn Rosetta Stone in English, squeeze a hand-strengthener, do Algebra 1 again, read, write, do Lumosity every day, go for a quarter-mile “hike,” do yoga – three poses and a half hour of Shavasana (the Corpse Pose in yoga, which rejuvenates body, mind, and spirit), and more. I will owe her for more than I can ever repay. There are no words to say how much I owe her for taking care of me and allowing me to heal back to who I was before.

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

Well, I have decided I don’t focus on long-term goals. I focus on making sure that every day I set one little goal I can accomplish and take baby steps in the direction I want to go. I went to the American Academy of Dramatic Arts in Hollywood. I have already done television interviews, and I have media conferences scheduled. I would love to move in the film direction, be on the Ellen Show, do a TED talk, be on talk shows, and spread the message that you can be and accomplish what you want if you focus on taking baby steps and not get stressed out about how far it is to go. I would also love to start getting paid for public-speaking gigs, start filming and tell a motivational story for my segments in ski films, and find someone who sets and accomplishes his own goals (someone who feels our happiness coincides; who loves the mountains, skateboarding, surfing, and being active; who believes our lives just fit in together; and who has the capabilities to go on adventures around the world with me). I want to stay as content as possible and strong and healthy. My future life has so many possibilities. My number one goal is to stay alive and strong and live out my life.

ski-clip-art-ski-clip-art-619. 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 biggest hints are the following:

Believe in yourself. Your doctor might not; your boss might not; your CEO might not; but, if deep, deep down you believe you are going to be OK, it will happen. There are many different levels that are “OK,” but you will be content with yourself.

It’s scary to think how far you have to go and to wonder why this happened to you. So focus on just the short-term. Set one short-term goal you actually can accomplish, and take baby steps in the direction you want to go.

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

Find something that makes you happy. Then go and do it. (For me, it was getting busy, accomplishing goals, and doing sports.) And smile as big as you can.

 

For motivational speaking gigs and media please reach out! MoCrazyStrong@gmail.com

 

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

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

 

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On The Air: . . . . . . . . . . . . . “Another Fork in the Road:” . . . . Panel: Behavioral & Emotional Problems After Brain Injury

On The Air: Brain Injury Radio “Another Fork in the Road”

Panel: Behavioral & Emotional Problems After Brain Injury with

Lisa Dryer and GeorgeAnna Bell

presented

by

Donna O’Donnell Figurski

images-1One of the most difficult aftereffects of brain injury is losing oneself. Depending on the injury and which part of the brain is impacted determines the type of emotional and behavioral change in one’s personality. A person who was agreeable, complacent, reasonable, and calm before the injury may change drastically to one who is violent, depressive, or struggles with anger management. These effects are not easy for others to understand – BUT, have you thought about how difficult it must be for the survivor?

Dryer, Lisa Survivor

Lisa Dryer – Survivor & BIRN Host

 

My panel, M.S. (Multiple Sclerosis) survivor, Lisa Dryer, and brain injury survivor, GeorgeAnna Bell, will join me to discuss this sensitive topic.

03 Bell, GeorgeAnna, Bell copy

GeorgeAnna Bell – Survivor

See you “On the Air!”

On The Air: Brain Injury Radio “Another Fork in the Road” Panel: Behavioral & Emotional Problems After Brain Injury

(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.

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Survivors SPEAK OUT! . . . . . . Heather Love Leffel

Survivors SPEAK OUT! Heather Love Leffel

presented

by

Donna O’Donnell Figurski

Leffel, Heather Love MS survivor

Heather Love Leffel – Multiple (M.S.) Survivor

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

Heather Love Leffel

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

Toledo, Ohio, USA     heatherleffel419@gmail.com

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

I have multiple sclerosis (MS), which essentially is brain damage. I had my first symptom at 19 years old.

4. How did your brain injury occur?

Well, my mother and twin sister also have MS. I do believe MS has a genetic aspect to it, but as of now, they don’t know the cause of MS.

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

I first noticed my MS in 1999. I was at my son’s T-ball game. I looked into the sky, and suddenly my left eye saw white flashes, and a black lace went over my vision. This was my mother’s first symptom too. I knew in my heart I had MS.

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

None. I went directly into denial without passing GO (LOL) (a Monopoly reference). I didn’t want to know I had MS, so I ignored every symptom I had. I was in complete denial.

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

No, I was not.

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

I have done a brief treatment of physical therapy for my balance and walking, but I stopped going. I shouldn’t have, but I did.

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

Oh my symptoms list is a mile long! I can name some major ones. I have issues with balance and memory. I have nerve pain that results in a burning limbs sensation. I also have excruciating headaches, blurred vision, vertigo, the “MS hug” (a tightening around the waist), spasticity, speech issues occasionally, and more.

10. How has your life changed? Is it better? Is it worse?multiple_sclerosis_believe_dream_hope_sticker-r9050a576f9804d99a628b40913eb66e5_v9waf_8byvr_512

In some ways, my life is better, and, in many ways, it’s worse. I have met some of the most amazing and wonderful people through this disease. I’ve also learned to slow down and appreciate life, but MS has taken so much from me. I lost my job, my fiancé, friends, financial stability, and the energy needed to be the mother I always was.

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

I miss working and having the money to fully provide for my children all the things I needed and wanted to.

gg6402838012. What do you enjoy most in your post-brain-injury life?

I most enjoy spending any time I can with my sons and also being an MS advocate.

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

I least like what my having MS has done to my family, and I dislike the fear I have daily that I’ve passed the monster to my children.

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

Honestly, acceptance happened fast for me – maybe because I knew in my heart for so many years that I had it, but was denying it. (I showed my first symptoms in 1999, but I didn’t break down and see a doctor until 2012.)

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

Yes. I lost my fiancé. The first year after my diagnosis was challenging. I had to stop working just three months after my diagnosis. That crushed me. I was going through depression. I was also having issues with trusting my fiancé, since he lived in another state due to the military. Long story short – my trust issues were justified. He cheated on me, got the girl pregnant, and secretly married her while with me (one year after my diagnosis and after seven and a half years together).

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

Oh my, yes! I have no social life. The only social life I have is Facebook really. I’ve definitely isolated myself.

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

I am my own caregiver at the moment. My 18-year-old son helps me a lot, but I wouldn’t call him my caregiver. I absolutely understand what it takes to be a caregiver. It’s a hard and selfless thing for someone to do. Caregivers deserve the utmost respect.

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

I hope to be married to a good man – someone who can look past my MS and see me for me. I hope to have a grandbaby. I hope my son is happily married and has an enjoyable life. I hope my youngest is enjoying college and living life to the fullest. Most of all, I hope and pray that neither of my children has multiple sclerosis.

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.

The most helpful thing I can say to you if you have MS is to allow yourself to grieve for the “old” you when you need to. Let it all out, and then pick up the pieces and move forward. You must allow yourself to grieve for who you once were and to grieve when things change because with this disease you are ever-changing. Allow yourself to feel it, and then accept it and continue to be the MS warrior that you are!

58df9ecb6c5b1b58ba8911d21946404420. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

My advice to others like me is to speak out. We need to understand that we didn’t choose MS; it chose us! MS is nothing to hide or to be ashamed of; neither is your MS story. To create awareness about this disease, we must speak about it. We must all raise our voices and be heard. One person can make change – it only takes one. Be the difference you want to see!

 

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

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

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

 

As I say after each post:

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!

Survivors SPEAK OUT! Evan Powers

Survivors SPEAK OUT! Evan Powers

presented

by

Donna O’Donnell Figurski

 

Powers, Evan Joseph Motorcycle

Evan Powers – Brain Injury Survivor

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

Evan Powers

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

Fort Mill, South Carolina, USA

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

My brain injury happened on August 30th, 2014. I was 31.

4. How did your brain injury occur?

I was riding my Harley V-Rod Muscle with friends, and I was hit by an SUV. The driver, in a rush to buy smokes, turned illegally left and hit me. I died, was revived, fell into a coma, and “received” a traumatic brain injury (TBI) (diffuse axonal injury and brain stem damage). I had to relearn how to do everything! I’m doing very well, however – “What doesn’t kill you makes you stronger,” and I’ve proven to be a tough SOB. (LOL!)

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

At the scene of the accident

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

A lot (LOL) – a craniotomy, arm surgery (compound fracture of my left arm), and intensive therapy (cognitive, vocational, physical, vocational, mental health, etc.). And I continued therapy (once a week and checkups).

Powers, Evan Joseph hospital

Evan Powers – Brain Injury Survivor

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

Yes. I was in a coma a month.

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 did intensive inpatient therapy at Craig Hospital in Colorado (an incredible place!). Afterward, I continued with intensive rehab. Now I’m going only once a week.

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

I have balance issues, left-side weakness, and memory loss. I am prone to impulsivity and mood fluctuations.

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

My life has changed in many ways – both negatively and, more importantly, positively! I suffer with balance issues, left-side weakness, memory issues, impulsivity, and emotional control issues. While those deficits suck (LOL), I’ve changed in so many ways for the better. I’m more positive. (I struggled with depression terribly before the accident.) I do not take life for granted, I am funnier and more fun-loving, and I am more passionate. Further, I’ve gained an understanding into the hell of having a TBI, and I have been moved to work with those who experience likewise – encouraging, sharing, and helping other survivors!

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

I miss some things – my job, my friends (lost a lot after the accident), having a sense of purpose, working, and – crazy as it may seem, considering what happened – riding my motorcycle (LOL). … But all in time!

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

I like how positive and passionate for life I am now. J

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

I dislike not working and my left arm being weaker.

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

Yes. I have been helped by friends, doctors, experience, time, and especially my mom!

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

Yes, very much so! I’m now divorced. (My ex and I had a rocky relationship before the accident.) Because of my problem with impulse control, I rush into relationships and “move too fast.”

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

Yes. I lost a lot of friends after my accident. There were several reasons: my crazy behavior, being afraid of interacting with me, or just being “lousy friends” (LOL) – (for the best, I see now).

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

My mom is my main caregiver. She helps me out tremendously. I couldn’t have done what I did without her and my brother, Chris. Their love and support is much needed and is greatly appreciated!

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

My future plans include going to school to get a degree in a field in which I can work with TBI survivors. I want to continue to heal, and I plan to start working part-time. I intend to better myself and help others, which has me excited!

Powers, Evan Joseph

Evan Powers – 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.

Recovery from a TBI is brutal, but it gets better. Sometimes you run; other times, you crawl. Keep pushing and fighting – it’s worth it!

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

Be patient with yourself. Do the best you can – that’s all you can do. Keep fighting. I know that it’s hard, but it is worth the struggle! Also, reach out – get involved with other survivors. We understand each other more then others without injuries can. We’re family – rely on, encourage, and strengthen one another!

 

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

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

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

 

As I say after each post:

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!

 

Image

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.

 

Here is this week’s Itty-Bitty GIANT Steps

Christy 2Christy Martin Parsons (caregiver)It doesn’t look like much to most people, but I know you all will understandWesley Parsons what a victory this is. After forty-two days in bed, my husband was able to be assisted to the wheelchair and go down and tour physical therapy without having blood pressure issues, or getting sick, etc. We’ve had a bad day today, so I had to look at this picture from yesterday to remind myself that he will get there and that it will get better!

 

JR Vigil Photo 12921022_972837799418436_1614007558_nJR Vigil (survivor)I shaved some serious time off my 100 metre at the pool. Yesterday I came in at 1:40! That’s with no legs! I like to imagine how fast I’d be with legs, which would enable me to do flip turns!boy-swimming-clip-art-620535

 

 

 

 

YOU did it!

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SPEAK OUT! Guest Blogger . . . Ric Johnson . . . . . . . . . . . . . . . . . . Why You Should Tell Your Brain-Injury Story

Why You Should Tell Your Brain-Injury Story

by

Ric Johnson

presented

by

Donna O’Donnell Figurski

 

Boy Blogger thMarch is Brain Injury Awareness Month.  It’s said that brain injuries constitute an invisible and silent epidemic. Invisible? Yes, because most times we, “the walking wounded,” seem fine and because there isn’t a high-profile celebrity who is a spokesperson for brain injuries. Silent? Yes, again, because most of us prefer to blend in and don’t have a public forum to speak from.

Is it possible to stop having brain injuries called “silent” or “invisible”? Yes, it is. It’s all about educating the general public.

Let’s start first by explaining. What is the difference between a mild, moderate, or severe traumatic brain injury (TBI)? According to my dictionary, “traumatic” means “shocking,” “devastating,” “alarming,” “distressing,” “terrifying,” “upsetting,” “wounding,” and even more adjectives. Which seems like there is no such thing as a “mild” or “moderate” traumatic brain injury. The only apparent difference is what caused the injury. A brain injury is a different kind of injury. We didn’t break our arm; we broke our brain. We didn’t remove a cast after eight weeks and get on with life; we needed to relearn, refocus, and re-navigate into our old lives if or when possible. There isn’t a 100% healing process – any person who had a brain injury still has a brain injury and is still recovering.

Concussion seems to be a brain injury that’s mentioned everywhere these days. That’s good – people are beginning to understand concussions. But, concussions are mainly (not always) from sports (football, skating, soccer, and skiing, to name a few). I probably had two concussions after getting hit by cars. I didn’t think I had a concussion at the time, but the more I think about it now, the more I believe I had a concussion from each. I didn’t have any major problems that I can think of, but the accidents happened many years ago.

Johnson, Richard la5-seQbctqTwXPuELQm7w3ZPSPra73-BTYsV2TzFrmHjlfsj8CAdfvj1wnfejETg2tSTJ4rfqDvOL9oMI_160CYm__3H82mWGki2QEVhZYz8ZLYhqad7IsWyOqj_li8nObQrOkqqzVt95fKknyW4oNd7A0fSkhYMnExzhzeBcwPbATtvzU5LI-TdmefuMcdZc7l959--u6H5aNYtBUCZmiCBS0BWSmt

Ric Johnson – Brain Injury Survivor

Traumatic brain injuries seem to be getting more attention as well. A TBI may seem as the most serious type of brain injury, but only because of the circumstance that caused the injury (a violent blow/jolt to the head or an object penetrating the skull). Most people think TBIs come from actions like bomb blasts, combat, violent shootings, or horrible car accidents. Well, falls are main causes of TBIs – falling down stairs, falling from a ladder, falling when attempting to cross the street, etc.

My injury happened when I fell from a ladder while cleaning the gutters on my house in October 2003. I spent one month in HCMC (Hennepin County Medical Center) in a medically induced coma. I needed craniotomy surgery to relieve swelling on my brain. I had many MRI (magnetic resonance imaging) and CAT (computerized tomography) scans, a feeding tube, a tracheotomy, a session in the hyperbaric chamber, etc.

After waking from my coma, I spent the next two months in two different hospitals to see what, if any, therapy would be necessary. I started with physical, occupational, and speech therapy sessions daily. In January 2004, I was released and was back at home. I wore a protective helmet until the bone flap was reinserted on my skull in February 2004. I continued with speech and occupational therapies at Courage Kenny (Center) from January to September 2004. I went back to my full-time job in October 2004.

Since then, I have become a member of the Minnesota Brain Injury Alliance Speaker Bureau, and a facilitator for the Courage Kenny Brain Injury Support Group. It looks like I recovered nicely, but looks can be deceiving. It may seem like most survivors can go back to their pre-injury occupations. In fact, most survivors cannot.Typewriter 4C

So what can survivors do? They can become advocates for all survivors. Let the public know that a brain injury is perhaps the worst injury of all. It doesn’t just happen to one person; it happens to the entire family as well. Let the public know by telling your story.

 

Thank you, Ric Johnson.

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

(Clip Art compliments of Bing.)

(Photos compliments of Ric Johnson)

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Survivors SPEAK OUT! Ventura Manzanares

Survivors SPEAK OUT! Ventura Manzanares

presented

by

Donna O’Donnell Figurski

 

Manzanares, Ventura Survivor 070515 1

Ventura Manzanares – Brain Injury Survivor

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

Ventura Manzanares

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

Denver, Colorado, USA     venzar2238@gmail.com

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

I was poisoned by carbon monoxide between the ages of 4 and 9. The poisoning was from low-level dosages over time (five winters in Colorado). The rest of the year, I often played in the basement – near the pile of coal. Coal dust has arsenic. Furthermore, the heat pipes were wrapped in asbestos paper. I remember that, when the furnace was hot, little silver specks would pop off into the air. So, I got a triple whammy – carbon monoxide gas, arsenic dust, and asbestos dust.

4. How did your brain injury occur?

When I was one month old, I was abandoned by my parents. I was raised by my step-grandmother. I was sometimes beaten and sent to the basement to shovel coal to warm the house.

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

All through school, I remember being on-edge, fighting, and having rage blackouts. My brain would “spin.” (When you drive down the road and look at the wheels of the car next to you, every once in awhile, you get a glimpse of the hubcap. That was how my brain functioned.) I didn’t know at the time that I had brain injury. After many years, I just ignored it and tried to fake it until it passed. My brain injury wasn’t diagnosed until 2010 – during a check-up when I was living in a homeless shelter in San Francisco. Then I found the carbonmonoxidesurvivor.com website.

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

I was never treated until 2011, fifty-nine years after I was poisoned. I was given an experimental drug – Depakote (a mood stabilizer) – for one year. It worked immediately and had a lasting effect. I still feel good to this day.

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

No, but at times I did fall asleep. I remember waking up on the dirt in the basement. I also had the most painful headaches – cluster headaches on the right side of my head. My headache would last for days and take days to go away. (Cluster headaches last for periods of time. They are among the most painful types of headache known. Typically, they occur on one side of the head.). The headaches lasted from my teens into my mid-30s. I lost my life – my wife and daughter and also jobs – from those days.

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

I have gone to a psychologist for most of my adult life, but the carbon monoxide poisoning was never addressed. My therapy now is EMDR (Eye Movement Desensitization Reprocessing) as well as binaural beats (non-musical sounds that can get your brain into a variety of desired states) and Hemi-Sync (an audio-guidance process that results in the left and right hemispheres working together) brain entertainment programs that I have installed on my smartphone. I can use them anytime I need throughout the day.

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

Tinnitus is a major issue in both ears – the ringing in each ear having a different frequency and volume. I suffer from throbbing and a sudden high-pitched ring that makes me deaf. I have to create a vacuum with my hands and pump out my ears to make it stop. I also experience nausea, dry heaves and a bubbling belly, and diarrhea – sometimes daily and several times a day. I get a feeling like I have an attached entity – like a heavy darkness – on the top of my head and on my face, throat, and chest. All these come in waves and last hours to days. I had always felt overwhelmed and stressed out. I could never keep a job for very long. Violence in my relationships and at work was my way of life.

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

As I’ve gotten older, I have eliminated as much stress as possible. But, my family (three ex-wives and two daughters) all hate me. In the 90s, I was a lot worse. I would wake up sick for hours at a time. It is not as bad now after the Depakote treatment.

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Ventura Mazanares – Brain Injury Survivor

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

I missed out on everything. I don’t have many good memories of my childhood. I don’t remember Christmases, my birthdays, or Thanksgivings. School was a blur of time. I do remember getting beat up by bullies. My second marriage was horrible. I was out of control and violent. I was stressed to the maximum of my mind.

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

I like that I have gotten smarter and more calmed-down. I want to live now. Before, I just wanted to be dead. I’m happy for the first time in my life.

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

I dislike the tinnitus for sure. I get really tired of the throbbing and hearing the ringing. It wears me down. I also don’t like the nausea and the dry heaves, which have me gagging all the time.

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

Yes. It has helped to know what caused it – carbon monoxide gas. I’ve also been helped by the carbonmonoxidesurvivor.com website. I thought I was insane, and so did everyone else. I finally have a reason why I have had so many problems all my life. I was a bad person with a bad brain. But, I knew I was a good person. I just didn’t know how to do life, until now.

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

Yes. Everybody hates me. They won’t accept the truth about carbon monoxide poisoning. My family life is destroyed. I haven’t seen my youngest daughter for sixteen years.

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

I had no social life before because I was overwhelmed. I was like a leaf in the breeze – drifting and lost. Now I feel like getting out more. Also, I have met many wonderful, supportive people in the TBI (traumatic brain injury) networks on Facebook.

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

I have myself as a caregiver. I was employed as such when I was going to massage school in the early 90s. I did massage for twenty years. It gave some balance to my spinning brain.

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

I am in the process of writing a book about my life with TBI. I hope to enjoy my retirement and my pathetic social security money. Maybe I’ll be living on a friend’s ranch and be at peace.

Manzanares, Ventura Survivor 070515 2

Ventura Manzanares – 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.

Seek help immediately – no matter how little something may seem. Don’t take the “You’ll get over it” answer from anyone. You know what you need. Go get the answers, and save yourself.

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

Be gentle with yourself. Surround yourself with gentle, supportive people. It’s okay to do it alone sometimes. In not talking and dealing with others, we can hear ourselves. Go with your cravings – eat when you’re hungry and rest when you’re tired. Sometimes your body knows better than your mind.

 

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

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

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

 

As I say after each post:

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.

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Survivors SPEAK OUT! Chelsea Rolph

Survivors SPEAK OUT! Chelsea Rolph

presented

by

Donna O’Donnell Figurski

 

chelsea rolph

Chelsea Rolph – Brain Injury Survivor

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

Chelsea Rolph

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

Toronto, Ontario, Canada

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

I have unfortunately had many traumatic brain injuries (TBIs). My first one happened when I was roughly 5. I have also had a concussion at 17 and two more at 18.

4. How did your brain injury occur?

My first TBI happened because I wasn’t wearing my seatbelt properly. Somebody hit my dad in a parking lot, and I flew out of my seat and hit my head on the seat in front of me. My later TBIs happened because of my favourite sport – basketball. You see, sometimes I get competitive. Sports were also my way of releasing any built-up anger I might have. I would let it all out on the court. One day, I was going for a ball, and I got an elbow in my temple. I blacked out for a minute, but I convinced my coach and the refs that I was okay. I kept playing until my coach noticed that something about me wasn’t right, and he took me off the court. After the game, I was taken to the hospital to get checked out. That was where they told me that I have a TBI and that I should relax – take time off from school and sports.08172116cc812061b05e6a42350f7002

My later TBIs were the ones that really affected me. I remember being in a basketball game (the second of the season), and we were down by 1 point with 44 seconds on the clock. I had a lane. I drove to the net, went up for my layup, and then darkness. I was out. I woke up lying underneath the net and feeling so confused. My coach and the ref were standing by me. I was immediately taken to the hospital. I remember that my eyes were doing weird things, such that the doctor called other doctors to take a look. I actually took time off from school that time. However, I was banned from sports for the rest of my life. I was told that, even with a helmet, I would still suffer from concussions.

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

I knew the injury was serious when I started blacking out. I was also really sensitive to light. I remember that the day after I hit my head, I woke up and I was blind. I opened my eyes, but all I could see was darkness. It was a really scary feeling. I called for my mom, and she took me back to the hospital.

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

I never had any emergency treatment. However, I was tested for anything and everything. I was given an MRI (magnetic resonance imaging), a CT (computerized tomography) scan, ECGs (electrocardiograms), an EEG (electroencephalogram), and a stress test. I had ECT (electroconvulsive therapy). I wore a heart monitor for a week. They did a sleep study on me, and I was given a neuropsychological test. Some of these tests gave me answers, and some did not.

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

I was never in a coma. I just had seizures and random blackouts.

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 was in outpatient rehab in Hamilton, Ontario. That hospital is the reason why I had answers. I went there for roughly one year. I was on a fast track because my goal was to discover if I was able to go to school. Basically I spent my summer in the hospital to do the tests and to get the results.

Chelsea Rolph 2 Survivor 061415

Chelsea Rolph – Brain Injury Survivor

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

I had a lot of problems. The one that affected me the most was the fact that I would pass out if I got my heart rate up. I was no longer able to play sports with my athlete-friends. I also noticed a huge shift in my personality. I used to be a very happy-go-lucky person. I wanted to be a Social Worker and help others. After my TBI, I became a huge jerk! I was always moody, I stopped caring about things, and I altered my personality so I wouldn’t let things affect me. I kept myself from getting attached to things I care about. I loved basketball, and in one second all of that was taken away from me. I still suffer from this. I have made myself an emotionless robot. I also stopped wanting to be Social Worker because I realized that if I couldn’t help myself, then I couldn’t possibly help others. I had to get bifocals. (I was having a hard time adjusting from up-close visuals to things far away.) I also had a hard time with my memory. I used to be in acting, and I could memorize a script easily. However, I was not able to remember what I read. My short-term memory was severely affected. My doctor referred to me as “an old computer.” (I had the information needed, but it took a while to get to me. I kept buffering.) I lost my abilities to multitask, to focus, and to sit still. My fine-motor skills suffered. Sometimes I have a hard time understanding what has been said to me and how to answer. I also had difficulty sleeping because I was having mini-seizures in my sleep.

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

Has my life changed? Of course! Is it better or worse? Who knows? I have suffered, and I have dealt with things on my own that people shouldn’t. I remember coming home from school crying to my mom because all of a sudden I was unable to do the things I used to do. In contrast to the thoughts of many people, I was still able to complete University. I might have just gone to college (like I should have), but now I can proudly say I have my degree! That might not have happened without my TBIs because back then I wasn’t out to prove anything. Do I now have a bigger debt than what I should have? ABSOLUTELY! However, I will never regret it. My life isn’t “better” or “worse” than it originally was, but I feel I have been very fortunate.

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

I miss my friends. All of my friends are athletes. Taking away my ability to be active took me from my friends. I was no longer able to do the things that I normally did. My friends kept playing sports, and I kept sitting on the sidelines. It wasn’t easy, but I found the ones who are able to understand that part and still be by my side. I really cherish that.

I also miss my ability to always be willing to go out and meet new people. I get exhausted a lot more easily than I used to. Before, I would never be home. I would always be working. If not, I would be playing a sport, and if I weren’t doing that, I would be with my friends doing fun, crazy things! My fiancé is a DJ, and a part of being the DJ’s significant other is going to his gigs and socializing with the other significant others. I still love doing that, but now I find it more exhausting than what it should be/used to be!

I would like to be able to go back and play sports the way I used to, but now I am a coward. I am scared of playing. I am scared of taking two steps backwards. I have moved on from what I wasn’t able to do, and I am now trying to find other things that I enjoy. I am slowly trying to get back into the shape I used to be in five years ago.

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

I enjoy the fact that I got to start over with a blank slate. I was able to take a step back and really see what and who made me happy. I love that my fiancé was in my life when I was first dealing with my issues. He has never left my side. I love that I was able to prove to doctors, friends, family, and the faculty at McMaster University that, despite what they thought, I could graduate without the accommodations I should have had. I am now out living my life. I am doing what every recent graduate does – looking for a full-time job, hopefully buying a car, and looking for an apartment. I am doing everything that most people do, except with an invisible problem.

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

I don’t like the fact that I lost something that I loved, which, I previously mentioned, was my love for basketball. I faced loss, even though nobody had passed away. I felt as though something I had strongly cared about was taken away from me. I also don’t like the fact that I have an invisible illness. I don’t want to make excuses. When I am having a problem with something, I don’t like to say, “I have had a concussion.” I don’t promote that about myself. I hated that I was so close to potentially receiving the grade 12 Athlete of the Year award and that it was taken away from me without a fighting chance.

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

A couple things have helped me on my journey to success. My rehab clinic helped me a lot! It helped me by giving me answers to the problems I was having. I don’t normally like talking about my feelings, but I do enjoy talking to one of my pets. My mom, my sister, and my fiancé have also helped me. The one thought that I always have is “My TBI happened. I can’t dwell in the past, and I can’t make excuses. What I can do is do what I love. If I have a challenge, problem solve. What can I do to make this work for me?” I realized that I shouldn’t have to give up on something because it is tough. I have to come up with my own solutions to deal with that problem.

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

Besides the fact that I am moody, my TBIs haven’t affected my relationships too much. It was tough dealing with my changed memory. If my parents asked me to do something for them, there is a good chance I would forget. When my boyfriend and I were originally dating, I hated that I had to ask him personal questions multiple times because I couldn’t remember. Other than that, not much has changed.

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

I have mentioned before about my social life. I felt like I had lost my friends because of my inability to play sports alongside them. I have become more of an introvert. I like coming home and relaxing. I get overwhelmed socializing for a long period of time. I need breaks from people – I need “me” time.

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

My mom was my main caregiver. It must have been really tough on her to have her baby daughter come home crying every day because of frustration. My mom has been my rock. She has been by my side every step of them way. I don’t know what I would have done without her. She was the one who supported me when I decided to go to University without any help, and she was there to see me walk across that stage.

Chelsea Rolph 1 Survivor 061415

Chelsea Rolph – TBI Survivor – Graduate McMaster University

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

I am always wondering what I want to do with my future. I would love to inspire some people. I have always thought about working at a juvenile detention centre. I would love to talk to the kids and show them that they can prove others wrong – “Don’t let others tell you who you are or who you’re not, and don’t let them control your future.” I want to write about the power of “Yes” and “No.” Other than that, I would love to get married to the love of my life and maybe start our own family!

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

I want others to know that something good can come out of this situation. I really had a hard time with this. I ran into one of my former high school gym teachers, and I was told that, because of me, the rules around brain trauma have been altered at the school level. The School Board has created guidelines with steps to follow if a student has a brain injury. I work at a recreation centre teaching sports to kids, and I walked out of the gym and saw the guidelines posted. A student must have time off, and when the student returns, he or she is to have a private room with no distractions. Even though I had to go through my TBIs with no support from my high school, except for some of my teachers, my journey helped create change for others.

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

Never lose hope! You are only as strong as you feel. Keep pushing forward, and make the best of every day. Seize the moment and life with no regrets. Things happen. If we dwell on the problems, we will never give ourselves room to grow and improve. If I decided not to go to University and just take the year off, I might not be in the state of mind that I am in today. I also might not have met the people who took me “across the ocean.” You are the main character in your life-story. You get to choose the paths you take. Don’t let barriers get in the way of your happiness. If something doesn’t work for you, make it!

 

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

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

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

 

As I say after each post:

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!

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